Stop topical steroid abuse!

Thursday, May 31, 2012

Help! I need somebody, help not just anybody!

Video~ Kline and Grammy monkeying around at his 1st birthday!

Happy birthday Grammy! we couldn't get through this with out you!!!

My parents are amazing!  My mom has pretty much moved in with us the last few weeks to help us get through this itchy bastard hell! 

My dad and step mom made a special trip out to see us in Cali and help from new jersey, just because I asked them to. 

Our support is amazing.........from our parents, family, friends,  Dr. Rapaport, and not to forget all of our new red skin family we have met on our itchy bastard journey! I hope that all of you get support like we do.  If you do have to go through red skin, you can not do this alone!  And if someone offers you support, take it!!!

Klines update, week 14 tomorrow, 3 and 1/2 months! can i get a woot woot!!!!
well, his break in flares seems to have broken....we got about 2 days and now he is itching like crazy again and not sleeping at all. still not oozing as much so that is good!  he is still living in the tub and has a major tantrum and flare when we take him out.  I am so proud that we have made it to 3 and 1/2 months, but i sure wish we were already at a year!!!!

love to you all, from the tubby! Loren xoxoxo

Wednesday, May 30, 2012

Week 13 and seeing some signs of relief!!!! Yahooooooo!!!

here is Kline when we were in Santa Monica to see Dr. Rapaport, this is a little glimpse of my real son, itchy bastard free! can"t wait!

Kline is actually looking less red, way less , less scabbing, and having days with out constant flares!!!!  He is sleeping more at night, up to 7 hours at a time. 

Now, I am not getting my hopes up that we are past the worst, I know how this crazy monster called red skin think he is on the way out, just to attack again.

But we will take it!!!! 

We will take the little bit of peace and little bit of time together we have with out the itchy bastard.  Kline is spending most, or should I say all, of his days in the bath!  I am talking 8 hours people, he is putting in a full work day! He doesn't want to get out because the itchy bastard tend to attack when people are drying off from a bath.  I have an email into dr. Rapaport to see if there is a thing as too much of a bath!  I'll keep you posted!

In his bath we use,
Either apple cider vinegar, epsom salts, or aveeno oatmeal.

And either olive oil or hemp oil...we may try grape seed oil too.

He seems to tolerate all of these in any combo at this time, which is way more than he could tolerate a month ago, so baby steps, well take them!

We still do not put anything directly on his skin, that is why I use the oil in the bath.  We were doing Vaseline but it seemed to start burning after a few days, so buy buy Vaseline!

I am starting to see signs of my old little boy again, and it is giving me hope for a better future, red skin free!

Love to you all! Xoxoxoxoxo Loren

Sunday, May 27, 2012

Here are the top 12 Good things about red skin syndrome!

week 13 of topical steroid withdrawal

1. You get to wash your bath tub a lot! 

Kline's only relief these days are hours and hours of baths a day. I put in apple cider vinegar or a handful of Epsom( to prevent infection) and a cup or so of olive oil in case he refuses lubrication after wards. So, there is a lot of greasy slipper tub time and a lot of cleaning my tub!  Actually,, who the hell am I kidding? I really don't clean it as much as I should!

2. You get clean sheets everyday! 

Kline's skin flakes off so much that we pretty much have to change his sheets everyday or it feels like we r sleeping in sand!  It is just another reward of topical steroid addiction!  He also, oozes a lot so his bed and he get pretty stinky!

Note, the oozing is NOT infection...when your skin is addicted to steroids your capillaries can not close on their own so your fluids just leak out through your open capillaries.

3.  You can stop spending all of your money on topical steroids and other cures for "eczema"!

We were getting steroids refilled every month and have wasted probably close to $ 15,000  on treatments for his uncontrollable eczema in the past year.  You name it,  we tried it... Now all we need is time, ice packs and sunshine( when he can handle it ) and a great support system!  No more wasted money!!  Thousands saved to pay off all of our bills! ;-)

4.  You get to spend a lot of time with your children!!! 

With the sleepless nights, I have endless amount of time with Kline that other sleeping parents are totally missing out on!  Sure, the kid may be screaming and itching and oozing uncontrol able but that is real quality bonding time!!

5. You will get to see how tough you are and how much you can handle and how you handle it.

It will make you a better Will be able to get through anything, be more compassionate, more understanding, and most everything else in life will be a breeze compared to red skin. I am hoping Kline will not be a total dare devil because of this.
Nothing will seem painful to him and nothing will be, that scares me!!

6.  You get to argue with a bunch of doctors and medical staff!

Since very few doctors and the medical community in general have no knowledge or don't believe in topical steroid addiction you will a chance to stand up to authority! What a rebel!!

7.  You will get introduced to one amazing doctor, that questioned why his patients weren't getting better and were only getting worse on topical steroids!

Dr. Marvin Rapaport founder of topical steroid addiction and red skin syndrome, one of the kindest doctors I have ever met.  We love Dr. Rap!!!

8.  You will gain a new family!

You will meet the most amazingly people in the red skin community that care so much about you. They will be your new tribe because only they can really know what you are going through!

9.YOu may even get a nice week long vacation....too the looney bin!!!!!!!

When you are diagnosed clinically insane from lack of sleep and watching your child go through  the most torture ever!  Believe me I would not mind going for a few night, how do I sign up for that vacation? ;-)

10. There is plenty of time for cocktails with all the long nights!!! So, Drink up! ;-)

They say  2 bottles of red wine are good for you a day, or was that 2 glasses? Hmm, I may have that wrong! ;-)

11.  Cure will happen!

Depending on how long you or your little one used, you will be cured from red will never have this full body, crazy itchy, oozing, scabbing rash again.  You may get eczema after you are cured of red skin, but Kline's eczema was totally manageable before red skin attacked! But we will never use topical steroids again no matter what his skin does!

12. You will appreciate life so much more when topical steroid addition is over! 

You will get a life where you are not obsessed with your Child's skin, what they eat, what they touch, what they breath in, who they hang around, what doctor's appointments they have that day, researching on the web day in and day out for a reason and a cure, ripping out your carpet, getting rid of your animals, trying an endless number of different creams and lubricants,  talking to medicinal psychic, doing voodoo, and just about everything else you did to try and stop the itchy red oozing scabbing rash all over your babies body.

Omg, what will I do with all of my time?  Oh yeah, I know....I will be a red skin syndrome activist to help others so that they get warned before it is too late for them and they have to suffer through red skin like my poor Kline.

So, watch out world , this mama's coming, and I may seem like an enthusiast , to put it mildly, but I will change the world of how topical steroids should be used!

Xxoo Loren

Thursday, May 24, 2012

This red skin crap can really turn you into an atheist!!

week 12 terrible video

  The nights are the worst!  Kline is so bad and I am so out of control with emotion and anger that I can not even video tape his itchy fits.  I curse god during these hours, wondering how he/ she could let something like this happen to babies?  How could a doctor prescribe something that could do this to babies and adults?  How is there not one second of relief for my baby? 

At this point I don't even care if this pisses off god or damns me to the firery gates of hell!
So if I piss off god by saying this, and well if he doesn't understand where I am coming from and sends me to hell, who cares, it could not be any worse than what we are going through with my poor son and his topical steroid addiction.  I would sell my soul to the devil, to save my baby from this constant hell known as topical steroid addiction. And you can quote me on that god!

And to those of you who have faith, you better pray for me!!  ;-)

Thanks the atheist!


Wednesday, May 23, 2012

I went to the dermatologist and allergist and all I got was a really nice pen and a tub of topical steroids. Oh yeah, and red skin syndrome!

These were all of the topical steroids Kline was prescribed during his 2.5 years of abuse!

He used......
triamcinolone .1%
hydrocortisone 2.5%
derma smooth oil 
mupirocin2%\ o/desonide .05%

 Sometimes we put all of these on in  the same day...multiple times a day for 2.5 years..and not one of kline's  doctor's  (to protect his doctor's I will change their names to  Dr. Ass and Dr. Wad!) or pharmastis's warned us that we may be using too much...we were getting tubes and tub refills every month for 2.5 years!!!! No one ever said not to use for long term.  To be fair, the dermatologist , Dr. Ass, only saw Kline 1 time when he was 5months old, but funny enough the Dr.Ass kept refilling his prescriptions for over 2 years without ever seeing him again.   Many times, we were not even informed that we were giving him steroids.  I trusted dr. Ass and dr wad, they were the experts, they went to years of medical school and had been doctor's for decades.  Why would I ever question what they said to do?

So, please learn form my terrible mistakes!!  Ask what the doctor's are prescribing you and your children  and read up on the medications!!  Do not trust that your doctor's knows everything or are telling you everything.  I do believe that doctor's really do want to help, but I also believe, they believe they are right. Some do not like You to question them and if that is the case, maybe they are not the best doctor for you.  the best doctor is and open doctor who is willing to learn and admit they do not know everything.  I imagine this is a good rule of thumb for life in general! 

So, I ask you what's in your medicine closet, you may just want to check!!!


Wednesday, May 16, 2012

It's a cruel cruel world!

this picture is kline at 1 week, notice his "eczema" legs and tummy..... I wish his skin was that good now!!

When Kline was about 6weeks, I remember sitting ( which I say jokingly, as I ripped all the way and broke my tail bone during his high forceps delivery, I "sat" on a pillow for a year) in the back seat of the car watching Kline sleep. I started to cry thinking about how little and perfect he was...and how I did not want him to suffer as we do here on earth.

I didn't want him to feel pain, mental, physical, or emotional.  I wanted to spare him from the hard parts of life and only let him have the great moments. I weeped for what I thought my son may go through in life, I had no idea what was really in store for him.

This past year has been nothing but painful for Kline. 

We started last summer off with Kline stepping on a huge price of glass.  I mean the gash in his foot was 2 inches long by probably an inch deep.  I rushed him to the emergency room and then had to hold him down as they stitched him up.  The pain was incredible and we were both balling uncontrollably.  It was the first time I had really seen him in uncontrollable pain.  It was heart wrenching and I had begged god that that would be the most pain he ever had to experience, I guess god wasn't listening to my prayer. The recovery was miserable, he crawled for about 2 weeks and we got ride of all glass in our house! :-)

Then, in the fall, Kline started to complain about it hurting when he pee'ed  He would hold his pee for 21 hours and run around the house all day in pain trying to hold it.  He also, had developed a full body rash that the doctor's believe was strep even though he tested negative for it.  (uh, red skin anybody?) Finally, after sonograms, blood work, urine samples, and a week of pure agony, a urologist took one second to look at his peenee and saw that his for skin  was closing up on itself and created scar tissue.  Which as we now know was From his red skin syndrome.  Another terrible surgery on his penis and a god awful recovery.  Note, nothing was ever done about the rash, once they discovered it was not strep they did not talk about his rash anymore. So, once again, I  prayed that this would be the worst thing Kline ever had to go through, god still didn't listen!

Then, this past February, Kline got sick...his all over skin rash came back and way worse this time.  He also had a hard time breathing and we went in to the doctors again. Once again, even though the tests said negative they said because of his rash he has strep. Not even listening to his lungs, because they were positive that the rash meant strep. 

2 days later when the antibiotic did not work and he was way worse and so was his full body rash, we went back into the doctor and they listened to his chest, pneumonia. At this time, the doctor asked what I was doing for his "eczema".... I told her that none of the antihistamines and topical steroids we working any more, they burned him like crazy and that we had stopped them.  She said, "well, you see what happens when you stop them, you did this to him!". Thanks doc, way to make a mom feel even more guilty!!!! And for the third time I prayed to god that he would be spared anymore pain in the future, I  started to wonder.....god, did I do something to piss you off or what?

Well, after kline's pneumonia got better his skin never did!  It just kept getting worse and worse. The steroids kept burning more and more. I emailed kline's allergist and was told that he knew the topical steroids would burn but they would not hurt him. That we should push through the pain and use them anyway.

At that point my husband and I decided to stop all topical steroids and start looking else where for help!!! 

Which brings us to today, with him in the worst hell any of us have ever experienced!  Topical steroid withdrawal is by far the worst pain any one in my family has ever seen.  It is pure torture and I am praying so hard that this will be the worst thing my son ever has to go through!  God I hope you are listening this time!!!!!!  I really don't know if he could experience anything worse then this physically.  So, we are almost in our 3rd month of withdrawal and he just went through a terrible week long flare, no sleep, unbelievable itching and burning, oozing all over, and
His ears even started to swell.  I hope that we will start to see some relief soon, this next year can not go fast enough! 

If I only knew, in that car 3 years ago , what he would have to go through because of the medicine I was going to be giving him.  I wish I could go back in time and tell myself all that I know now.  That is why I write this blog, in hopes that it will warn another loving mother of what hell their beautiful babies future could be if they go down the path Kline went down.  No one should have to watch their baby suffer as we have in and day out, there is no relief for my poor little baby. 

Gotta run the itchy bastered has come again to torture my baby!

One sad sad mama, Loren

Please sign this petition! And help to warn others of kline's hell red skin syndrome! Thank you!!

Tuesday, May 15, 2012

Please sign this petition and pass it on to all of your friends and families! Thank you!!

Here is the link to the petition to get a warning label of red skin syndrome / topical steroid addiction withdrawal on the topical steroid labels. It is so important for everyone to know what could happen if you use topical steroids incorrectly! Please don't let klines pain be in vain, we need to help others and protect them from ever going through the hell that Kline is going though, thank you so much!! Loren xoxoxoxoxoxoxoxoxoo

Sunday, May 13, 2012

"Opinions are like assholes. Everybody has one and everyone thinks everybody else's stinks!"

my all time favorite quote......every time I think it I laugh and it is soooooooo true!!!   When you are doing something considered new or radical, like say taking your son of topical steroids even though his doctor's have told you to up them, you get judgements. Everyone is allowed their own opinions, that is what is so great about this world.   So, if you don't believe my son has red skin, fine don't believe it, but don't try to convince me otherwise!! I know in my heart, as does every member of our family who has watched Kline's hell day in and day out, that he is suffering from red skin and that the topical steroids have recked havoc on his little body.   If you think it is wrong that I am not giving my son steroids....  If you believe that we are choosing this hell for him, then again fine, believe I am hurting him, or neglecting him. Believe what ever you would like.   But if in time, he has healed, promise me, you will think about red skin in a little bit of a  different light. That it may be an actual syndrome.  That maybe, just maybe the medicine we have been giving our babies to try and help them may in fact be hurting them.   Then come to me and I will help you get through this hell with your little one and I will have no judgments of you!  I will not say I told you so, I will say , what can I do to help!  Xoxoxox one protective mama bear!  Loren

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

Saturday, May 12, 2012

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 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

Friday, May 11, 2012

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

Thursday, May 10, 2012

"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!



Tuesday, May 8, 2012

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 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

Thursday, May 3, 2012

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 
> ;-)

Tuesday, May 1, 2012

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 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!!! Thank you so much for all of your support and prayers, we need them!! Xoxoxoxxoxoxo Loren.....I heart dr. Marvin Rapaport!!!