Stop topical steroid abuse!

Wednesday, April 25, 2012

what a bad day looks like on topical steroid withdrawal!

video
This was how all day was yesterday for poor Kline!!!

I beat up the vacuum!


So, if You have caught on yet, the stress of having a child with topical steroid withdrawal is all consuming.  No one ever sleeps.  There is a massive amount of screaming , crying , itching and pain, both physical and emotional. 
There is no time for doing simple things,  like grocery shopping , cooking, cleaning and even taking a crap.  There you are sitting on the pot when here comes your itchy one .....  He needs help, but hey, you've gotta poo, so what do You do?

You hold him on your lap, itch and hug him while you are taking a dump. Totally normal, right?

Well, sometimes things need to get done around your house, so child protective services doesn't come because your house looks like something off the tv show hoarders!  The others day, I was trying for hours to finish vacuuming the house....finally after doing tiny sections all day long, I just had to finish.  Kline was having an itching fit and he chased me around the house screaming " itch me mom please!!!!!!".  I lost it, I don't think anyone has ever been so abusive to a home cleaning machine.  Take that hoover!!!!  Poor thing, what has it ever done to me but sucked! Lol. One of my favorite movies is punch drunk love with Adam sanders, and in that movie he gets upset and beats up the bathroom.  And now I can say, " I beat up my vacuum!".

And when I was done, I held Kline and cried.

And he said, " you done mommy?" he was talking about the vacuuming, not the vacuum abuse! :0)

I hope so Kline, I hope so!! But, until my baby is done with this hell of what we call topical steroid withdrawal , my  appliances better watch out!!!

Ps. Kline had a very bad day today....it seemed like the itching fits never stopped, normally he gets a few hours between them, not today.  My poor poor baby!

Hey, if anyone out there knows how to get in touch with oprah, could you give me the info.....we need her to help get the word out about red skin!!!
And since she is the most powerful woman in the world and everyone listens to her, it may help others out there who are searching like we were!!!!! That's Not too big of an order is it? ;-)

I hope to god that all of you red skinners out there sleep tonight! Xoxoxoxooxox
One crazy mama!

Monday, April 23, 2012

Playing with bubbles outside should not be stressful, right?


I believe kline is 7 or 8 weeks of the topical steroids!!!
video

For kline's birthday he got some cool colored bubbles from grandma and grandpa. So yesterday we ventured out in to the back yard to "play" with them.  Right away Kline poured them all over his skin and I freaked out. I didn't know what they heck they would do to his mess of what other people call their skin! 

 So, after I screamed at him for getting that stuff on him and freaked out that he was going to go into a itching uncontrollable fit because of it, we went to play on his play set. I pushed him on the swing for a little bit and then the hot sun was bothering him so he wanted to sit in the shade.  We sat down and all of a sudden the boy was covered in ants, he sat in an ant hill, really, come on!!!!!!  So, yet again another freak out...you know how you get itchy when you see a bug or a bug crawls on you, well, imagine you are already extremely itchy and then on top of that you are cover in ants crawling all over you! 


So after another freak out and strip down from both of us, well, ok, I didn't strip down but it makes for a better story!  We decided outside was way too stressful and we went inside!

Life should not be this complicated for a kid!!!

He should be able to play outside all day, not for 20min full of freak outs!

I hope one day that my itchy baby can once again enjoy this wonderful place that we live in!!!

Xoxox
Loren

Saturday, April 21, 2012

I guess if you cuss at "god" long and loud enough he send you an angel!



About 6 weeks off steroids, I think????


Kline's angel came all the way from England! Her name is Kelly and she has a son who is going through topical steroid cream withdrawal.  I posted on the eczema support Facebook page begging for help and who should appear but our British angel Kelly! she said  "Have you heard of red skin disease" (can't you just hear her adorable accent?).  Well no, I had not since none of Kline's doctor either believe in it or support it.You may be asking " Loren, what did they support?" Well, I will tell you, more steroids, higher doses and more applications a day! Even though they were no longer doing anything for his "eczema"....his body couldn't get enough of it!!!! 

His body need the crack cocaine, which just happened to be in the form of topical steroids!

I Googled RED SKIN SYNDROME, right away and in a second I knew this was our answer, UK angle Kelly had saved our lives!  All of those fantastic steroids (sarcasm) I had been lathering all over my son since about 4 months old where turning against him!  Killing the largest organ on his body ,his skin.   The organ that is supposed to protects him from all of the crazy ass allergens and chemicals that are everywhere in our environment, yuck! 

I called my mom right away, woke her up to get online, in a few seconds she too knew this was it! Then my dad, yep, no question about it, red skin syndrome all the way. I got Dr. Rapaport's number in Beverly hills and called first thing in the am...he said he would come in special for us on Friday,(his day off) just 1 and 1/2 weeks after I had learned of this terrible , unnecessary curse, we would be talking to THE MAN!!!! The one dermatologist that doesn't just keep pumping your baby with roids!

As we wait to fly and see the dr., I have met other amazing angels...mothers that have been through this hell with their babies and are proof that they will get better once the withdrawal is over. And a mother so close, 30 miles to be exact, that has a son who went off steroids close to the same time as kline.....who is suffering terribly.....someone who knows what it is like to see their baby rip apart their skin and  not be able to enjoy life like a normal kid does, or should I  say, a none steroid addicted kid does!!!!  These women are my new tribe...we are the warrior mama's and watch out topical steroid cream, we are here to kick your ass!!!!!!  Hopefully, we will convince Doctor's around the world, that this crap should not be used!!!!!!!!

If you are using steroids or know someone who is please stop!!!!

FRIENDS DON'T LET FRIENDS USE STEROID CREAMS!!!

Thank you UK Kelly, YOU KNOW WHO YOU ARE, YOU SAVED OUR LIVES!!!!!!!!!!!


XOXOXOXOXOXOXOXOOXOXOXOXXOOXOXO

Watch out Steroid abusing Doctor's and pharmaceutical companies, I am coming for you!!!!!!!!!!!!!!!

Itchy Kline's mommy!
Loren

xoxoxoxooxoxo

Withdrawal fast all of our red skin friends! xoxoxoxoxooxoxoxx

Thursday, April 19, 2012

Don't cry over moldy nuts!


Well, I bought something like 25$ worth of raw nuts the other day....and I had been told that you had to soak raw nuts or they will give you tooth decay or something, so I soak these expensive ass nuts, had to work over an hour to pay for them. And what should happen, the little nutty fuckers, we ruined! Moldy sluge all over them!!! So, I didn't get yummy salty nuts (every girls dream!) I Got nasty moldy nuts, now who really wants to put a moldy slugie nut in their mouth? well, one may think, 'oh well, no big deal, don't cry over moldy nuts, right?,

Ah no, try again. here is how unstable I am, I was historical.....crying and wining over my moldy nuts. My husband must have thought I was insane, yet again!

Having a very sick kid will make you insane, as I have proven in all of my other posts. And being on gaps has not helped with my insanity. I am so depressed and so over worked I can not continue on gaps ...not now anyway. It is something we can always come back to, but right now, I need to take care of my son first and then myself. cooking all day while my son really just wants me to sit on the sofa with him, is robbing both of us. So, I am saying ado to Gaps.....Kline will do a organic, free range, grass fed, and gluten, dairy, egg, nut and sugar free diet and what ever dr. Rapport tells us to do as well. I know I am a quitter and I hope this is the right decision, I have questioned everything I have done and haven't gotten one thing right so far. So, I hope this will help us be happier and less stressed. I'll let you know how that goes....good bye gaps! And may gaps help all of you that are trying it and much faster than it helped Kline and I! Good bye my dear gapsters!! I really don't know how you guys do it? May you all heal fast!

Ah, crap now this means I have to figure out how to change the name of my blog......hmmmmmmmm

Xoxoxoxooxx
The crazy quitter!

Loren

Tuesday, April 17, 2012

one of our normal car rides....

most of out days and nights are like this! Steroids really suck the big one if they did this to kline!!!!
video

Right now , I want to bitch slap steroid creams and the doctor's that prescribed it!! WTF?

So, we are pretty freakin sure Kline is having steroid cream with drawl, he looks like a text book case....but omg, some people look way worse than him, poor things!!!! I am so fucking pissed right now at the dermatologist, allergist and pediatricians that told us to use steroids for his eczema! People, if you think they are helping you, they are not!! Please learn from klines hell that they are not the answer!!!!!! Gaps may cure eczema but it will not cure this withdrawal. Now, we r looking into flying to Beverly hills, to see dr. Rapaport if we can get in!


I hope to god this is the answer and I hope to god he goes through it fast!!!!!!!!!! Maybe I won't be cursing god much longer, hope so!

Kline has been on steroid creams since he was 6months old , multiple times a day and somedays I put it all over. We did this too him? WTF? He has been off steroids for at least 2 months and before that very minimal.......hence his terrible skin reactions since nov!!!!!!!! There may be a little light at the end of this god forsaken tunnel we have been trapped in since nov, come on god don't let Kline down! As little Trips mom said ( he had a terrible disease called eb). God, I need a pinky swear! Please make him better!

Xoxoxo hopeful, Loren
this is a milk itching fit...i think he may have red skin syndrome....what do you think?
video

Sunday, April 15, 2012

I quit, ah, shoot,no I'll stick with it, no quitting for sure this time, ah, crap, let's give it another go!


It has been a very confussing weekend. I was advised by Klines holistic doctors That gaps should be helping more by now and that maybe we should go off of it.....so sat, I was hell bent on going off of gaps. I went to work at plumpjack's for a great wedding with tons of food, and man oh man did I cheat!! You name it, I ate it....cheese off the top of a pizza,icing off of the cake, raw veggies, wine and hot coco with whip cream. My bad gas was the worst of it and that really only bother the people I was around. Then Sunday I felt like I had a hang over and just a little yucky, not nearly as bad as I was expecting it to. I thought for sure I would be running to the bath room to either shit my brains out or puke, but no, just a little stanky toots and a mild headache. Guess that didn't teach me a lesson about cheating.

So, then Sunday, I talked to my gaps practitioner and emailed the doctors again, and decided to move to full gaps and add in a rice protein powder thing that is supposed to help heal klines gut. So, we will be cheating some, Kline only with the rice protein and I imagine I will cheat more than I should. We r still probably eating too much honey, but come on people......we have to enjoy life a little!!!!!!!!!


The thing about intro, besides almost killing us, is that there are so many rules. It is so over consuming and there is no time to do anything but cook, eat and clean up your kitchen. Kline and I aren't having fun anymore.....we can barely get ourselves out of the house. So, I am going to try and mellow out about the diet and enjoy Kline more.

Kline ate a raw carrot today and you would have thought it was the best thing in the world!

We also started his new pj's from England and I swear they help him sleep so much, it is crazy!!!!!!!!!! If your kid is having trouble sleeping, because of itchyness, please try this pj's....it sounds insane but they seem to really work!! They are spendy but worth it for the extra hours of sleep!

http://www.eczemaclothing.com/



My depression has gotten so bad on gaps intro that I am looking into a therapist and possibly meds, I am one crazy mo fo...as I am assuming you have already read! ;-/ kline deserves a happy mommy and I hope that is what I can give him soon, the natural depression remedies aren't cutting it. I have had depression for a while now, not sure how it came on or why? Things used to just wash over me and not bother me, now, I freak out at the drop of a hat, I cry over spilled milk, and pretty much can't handle anything. I am amazed at how bad my depression has gotten on gaps, I never thought it would be like this.

Kline is still very very itchy, red ,and oozing. His bed is full of dead skin every morning and so is our couch. He hasn't wanted to play outside, read books, play choo choo's or anything. His quality of life is so low and it is so hard to watch. You want the world for your baby, but not a world where they can't stand their own skin. He handles himself so much better than I do and I am so proud to be his mama, I just hope and pray with all of my soul that one day he will be able to enjoy his life again, fully!

Bare with me, I may quit gaps again next week! ;-) or I may just stay in it long enough to get us better! Fingers crossed.

Xoxoxo loren

Friday, April 13, 2012

Please, can't we just be numb?!?!

If we are going to make it through gaps, couldn't we just be numb? Couldn't Kline be numb to his itchiness and sleep! Couldn't I be numb to this depression crap? I so wish I was numb emotionally, instead of feeling and reacting to everything like this. It isn't fair to any of us.....I am a crappy mom because of it and then I feel even more guilt for being such a crappy mom!

Poor Kline. couldn't his nervous system be numb, I can't stand hearing him scream uncontrollably at night from his itching fits. This isn't fair god! Make us numb or make us better! Something's gotta give!!!!

We are on day 35.... I think, of gaps intro stage 3-4 ish, started our probiotics today, so that should make for some fun die off tomorrow!

Kline has been pooping better but I haven't taken a dump in 3days....enema time, woot woot!!!

We also were going to do this gaps intro with 3 other families in Truckee, but it looks like they all may be bailing on it, intro at least. Guess I'm the only crazy mother fucker that will do this shit.( sorry my cussing came back!) ;-)

Well, better mosey up to my douce bag! Ta ta for now!

Xoxoxox Loren

Sunday, April 8, 2012

Help!!!!!

Well, I almost gave up on gaps intro, yet again...I am so depressed, so angry, short tempered and well, just all around pissed off, that I am wondering if this is worth it? When will it get better for Kline, still no and I mean no sleeping!! He is still a mess skin wise, so itchy all of the time. And to top it off he was sick all day Saturday...and ended our crappy day with a nice puking session. My poor baby!

I need encouragement people!! I need some one to swear to me that this will work, and if you could give me a timeline that would be great too!!!! I am so hungry all of the time and I don't want to eat any of the gaps foods. We r on day 31.... We r somewhere between stage 3 and 4 I think. It is confusing since we can not do eggs, dairy or nuts, we kind of skipped stage 2. I can not get Kline to drink the broth's or eat the soups....and now that I added gaps bread and pancakes, that is all he wants! Ugh! Any tips would be great!!!!! We need to do more probiotic foods, but I have such bad die off, anger wise, I am afraid to do them. We still aren't on probiotics but should be starting them soon.

I never in a trillion years would have thought that food could make you this miserable and then the icing on the cake, oh my god I want a cake, a whole chocolate cake with tons of icing!!!! Oops, sorry! And then the icing on the cake is that this is actually supposed to be healing and helping you, it feels nothing like healing and no where near helpful!

So come on friends, family, other gapsters, please make me see the light at the end of this god forsaken tunnel!!!!!! I need help and I need encouragement, or else I may just jump right off this gaps bridge into a nice warm river of chocolate fondue!

Night

The angry grumpy frustrated and hungry mama!!! Loren

Friday, April 6, 2012

Easter, you are killing me!!!!

could there BE any more candy at the stores during Easter? it f'in sucks!! I want to go in there and eat every single last piece of that delicious processed sugar ridden chocolate god forsaking goodness!!! Is there anything that tastes good on this diet? I am so sick of meats, soups and veggies! This is the hardest diet I have ever done in my life...and WTF is up with not being able to cheat ever! I am a Little mad at Campbell-mcbride right now, can you tell, I want chocolate and coffee and processed food...it has been 28 days and this still frickin' sucks!!!!

It's probably bad right now because I figured out we were eating way too much honey, oops, so I took it out and now my craving are sooooooooo bad!!

Easter come and go already and get all that crap out of the stores, will ya? I will not take Kline into a store right now, it would be pure torture!

Happy Easter people! Enjoy your freakin' chocolate bunnies!!

Xoxoxxo Loren

Wednesday, April 4, 2012

Lack of sleep is killing us!!!

So, I don't think it is gaps that is making me a f'in freak! I think it is getting anywhere from a whopping 2 to 4 hour of sleep a night! I am not talking a little fogged brain and a little of my rocker, I am talking screaming crying and begging in the fetal position for sleep, from not only Kline but god! I am one crazy mo' fo' with out sleep! Kline seems to be handling it better than I am and so is my husband.

This is how our sleepless nights go......

I work until 2:30am get home and often Kline is up, either he woke up and is itchy like crazy or he hasn't ever gone to sleep. Then I take a bath to wash off all of my dust mites and Kline and I try to go to sleep...normally falling a sleep between 4am and 6am, then if I am lucky he will sleep 2hours, wake yet again and have an itching fit, go back to sleep till 10 or 11am. This fucking sucks people!!! Never in a million years did I think my 3year old would sleep worse than a newborn!!!!!

I pray that this will get better for all of our sanity! I ordered special eczema pajama's from Europe that are supposed to help with the itching, I hope they get here soon, before I really lose it!

Well, I hope you all sleep well, I doubt we will!
Xoxox Loren

Monday, April 2, 2012

People are starting to stare!

video


I guess we don't leave the house to often because I never realized how bad Kline looks to others, I guess I am just so used to it. Well honestly, most of the time I am so far up my own ass when we go out, that I don't notice others. Well, we went out today and many people noticed his skin and itching. They all wanted to help with ideas to help him and a few of them even reared up just looking at him.

I know it's bad and I can see all of his pain and rashes, but I guess it just becomes our norm so we don't really notice how he looks. I see my son in pain but I don't see the scares, scabs and redness all the time. I just see my sweet little beautiful boy.

I could not imagine how it must feel to be him, itching and uncomfortable in his own skin. I'm not sure I would be able to live through it. The people starring , the lack of sleep and the poor quality of life. Oh, yeah, did I mention the no sugar, grains and processed food diet I make him do too! No fun at all!

Kline is so brave and strong, he amazes me! I love you itchy bug! Xxoo mama.

Sunday, April 1, 2012

Alert the presses! Kline slept 9 hour in a row

Yeah, yeah, yeah, yahooooooooooo!!

I slept a whole 6hours in a row, can't remember when that happened before....month and months ago! So, are these signs of a better future???? Hope so!

Day 23 we added in green apples to our juicing , our poopin' juice!! It does seem to help me, carrots and now green apples.....I can't get Kline to drink the carrot juice but he loved the apple juice.

I feel like all day long I am forcing Him to drink something or eat something he fights me on. Such a bummer!!

I overhear filled the bath tub today and soaked the floor. It is very hard to do a million things at once, which seems like my life since gaps and starting a full time plus job...I hope things settle down for us and we get used to all of the changes!

Come on kline, sleep well baby!
Oxoxxo Loren