Stop topical steroid abuse!

Wednesday, June 27, 2012

here we go into our month 5...month 4 see ya!

Here is kline week 16-17 can tell which pictures he is flaring in as he is a rock lobster!  he was still in water most of the time but he did have some good days.  now the itchy bastard is back and he also has swimmers ear...thanks to the hours of water time!  guess what the give for that.....antibiotic\steroid drops....passed on that and went with the internal antibiotics,  lesser of the two evils.  Here we go into week 18 and month 5! can't wait for our 6 month anniversary!

sleep well itchy world! xoxoxo Loren

Friday, June 15, 2012

We are making plans!!

here is kline's eczema pre-steroids!  what was i thinking , you can just see a tiny bit under his chin, elbow knees...seems like nothing now, but then it seemed terrible!  If we only knew!!!!!

Kline and I were chatting while he was in the 11th hour of his bath, and I asked him what he wanted to do when he got better.

He said,

" I want to go to the roar park!". Which means the local truckee park that has dinosaurs to climb on, hence the roar! We went there all the time with our friends and miss it so much!

And I said,
"ok, what else do you want to do when you get better?"

He said,

"I want to go to a restaurant and You bring my food!"

Let me explain, Kline has had severe antiphalactic food allergies since birth( to dairy, eggs and all nuts), so when ever we go any where I pack  his safe food. Just going to a restaurant and eating their ketchup is a treat for Kline.  So sweet and sad!  Most kids get to go eat where ever they one worries about whether they have their epi pen or if he may pick up a peanut at the park.  What a life it would be to have no worried about healthy food that could kill my baby.

So, I guess when he feels better, we will be at a restaurant but unfortunately I will still have to cook! ;-) a mother's work is never done!

kline update, we welcome week 16 off steroids!
he is still flaring but seems to have some good moments!  the elderberry syrup doesn't seem to working as well, not sure if we have to up the dose??? his soars that he has had for months and months are looking better as of now, could change at any time though. I am not getting my hopes up about anything!  I hope the next month will bring a lot more healing and rest!!! and hopefully a little fun too!  ps. I can not get this kid to eat anything healthy, so frustrating!!!

Heal all of our red skin family! xoxox Loren

Thursday, June 14, 2012

Depression is depressing!

Depression is depressing! 1st off if you haven't please sign this petition to help get proper labeling on topical steroids,so this does not happen to anyone else!!!!! Here is the link I have been really down in the dumps lately.....I thought kline was seeing improvements and blamb oh! that freaking itchy bastard strikes again!  Damn you itchy bastard!!!!  I curse you! I worry that when he is healed I will still be stuck in my depression...but this morning he had about 30 minutes of playing outside with out a flare and we actually enjoyed it!  I was of course hovering over him and super worried the sun would flare him. But I saw hope of the having fun together again! Lately, Our house feels much like a funeral home. People come to visit and I find it hard to smile.  I cry a lot and hate leaving Kline to go to work.  I am all consumed with his flares, pain and itch.  There is not a second of the day I do not think about him and how he is suffering.   We are starting to look into alternative medications that I am hoping will help! But only time will tell, if we can even get them.  I will blog more about this over the weekend when we know more. Stay tune it's going to be a hot topic! ;-/ My birthday is coming up on the 18th and there is only one thing I want.  My son's suffering to end!  So, if someone can wrap up Kline all healed and drop him off at my front door that would be the best present ever!   I know what I'll be wishing for when I blow out my candles! Klines update....almost 16 weeks, 4 months of pure hell! He is still flaring like crazy. He will be pale as a ghost then seconds later red as a lobster.  The itch, burn and pain are insane!!  He is sleeping better I think because we are giving him elderberry night time syrup!  He has slept 8-12 hours a night since starting it! He still is oozing very little and his skin looks pretty good, a few scabby spots but not bad.  Now, If we could get the flares to stop coming and ease the pain, that would be awesome! His friends and cousins came over and he can't even play with them he is flaring so badly. Today his cousins came over and he had to be in the bath, everyone got in and he flared the whole time. He kept asking his older cousin to pet him.  Very sweet! Although Quinn got sick of it pretty quickly and said, " why am I the only one working ,here?" lol He loves seeing people and misses everyone so much.  It is just hard because he is in so much pain all the time he can't enjoy his company! Well, that's enough depressing crap from me! Xoxox Loren

Saturday, June 9, 2012

Kline's television experiences!

So, Kline has been watching a ton of when he is not sleeping he is watching, so he is watching all of the time, since there is very little sleep.  Not the best parenting but it takes his mind of the itch which is huge!

Last night, or should I say this morning around 4 am....he was watching the freaky deaky power puff girls (freaking deakies need love too!) and all the freaky deakies got super sun burnt. Kline let out the loudest scream and said,

"turn this off, I don't like sun burn!"

So, I turned it off...let me tell You these dang Super puffs, looked just like my poor son! No wonder he didn't want to watch, here he is trying to escape from his terrible sun burn like body to only see other people suffering.  He is so smart!  And now, when he wants to watch power puffs, he says,

"but not the sunburn one, I don't like that one!"

Then this morning , we were watching 64 zoo lane( a shout out to our British peeps,)
And the rhino had itchy ticks all over him...

I said, " look that rhino is itchy too!" and he said

" no, not like me mommy, my itchies are inside me. He has them ON him!". Again super smart!

Well, a bird friend came and ate all the rino's itchies away, so I pretended to eat his itchy bugs away. No go! He said,

" mommy, my itchies are inside me!"

Poor baby!

Sweet heart, one day your itchies won't be inside you anymore! I promise!

I love you itchy little man!

Xoxoxo mommy!

Thursday, June 7, 2012

When life gives you lemons, screw the lemonade and grab the vodka!

~kline blowing his nose!~  not very environmentally friendly using all that toilet paper, kline!

Any parent will tell you, it stinks when Your kid is sick....when Your kid has red skin, your kid is sick, really sick 24/7.... No one gets any relief.

I have no idea how single mom's and parents with other kids do this!  It amazing! Here I am a mom, with one kid, a very helpful husband, family and friends that help out and I still feel like I am drowning! 

This is when the vodka would enter the scene, if I didn't have to work full time at night and have to be with Kline full time when I am not working! Which I guess is good because we don't need more than one addiction to fight, right now! Lol

So, my hat goes off to all those single mom's out there!  And all the parents that have more than one kid to take care of...I really hope you all have the support that I have, You should! And if you don't I am sorry. 

People just don't get what this is really like, they think ,........oh, your kid is itchy!

Ah, NO! My kid is insanely itchy , rip you skin off itchy, scream all night itchy, want to kill someone itchy and lets top that of with tons off pain too!

No one should have to get through this Period, but going through this alone with no support is criminal!

So, if you know someone who is going through something really crappy, reach out and see what You can do, it could make someones day! I hope to reach out to many more people once Kline is healed!

~~~Week 14 and 1/2 Kline update.  He slept last night for 8 hours straight!! Sorry to brag! ;-) he is starting to ooze again a little.  Which of course stinks!  The itch is crazy when he is out of the tub.  So, he is still bathing for up to 12 hours a day! Crazy, I have never spent soooo much time on the toilet!  Even when I did have food Poisoning! 

Kline played in the rain the other day. So cute!

Also, because his skin is healing he is able to walk again!

The other morning he said,

" mommy, I can walk again! I better! No itchy bugs anymore!" and then 2 seconds later....

" Mommy, I itchy!"

Baby steps people, and thankfully he can take them now!

Have a cocktail for me! Cheers! Xoxoxo Loren

Sunday, June 3, 2012

"I wish I had friends, mommy!"

Notice in these pix his is not as red, he is not in a capillary red flare here (still a little itchy but not hot crazy red itchy) look at his skin, he is healing!

and literally 2 minutes later, here he is flared!  see below...his neck, face and ears got all red and then about 5 or so minutes later his flare passed and he was back to the top pix.

And bring on the tears!!  Yes, that is what Kline said to me in his 7th hour of bath time today. He was watching Some kids show on his iPad and they were talking about friends.  And he turns to me and said," I wish I had friends, mommy!"

Water works!!!!! 

Kline and I are very social beings, we always had people over for monthly dinners and ton and tons of play dates.  Those have stopped!  We can't entertain anymore because his hot itching fits are so bad. He can't even enjoy his friends when they come over to visit because he just feels plain old crappy.  So, I can not wait for us to get our life back and do all the fun things we used to do with all of our amazing friends.  This is another thing I never ever want to hear my little boy say again!!!!! EVER!!!!!

Kline update...he slept 8 hours in a row last night which was amazing!!!!  And so needed!!!  But then he had a bad flare day today, he spent 12 or 13 hours in the bath.  I asked him why he didn't want to get out and he said....

"I itchy when I get out, mommy!"

Then I said,

" don't you get bored in the tub all day?"

He said,

"no, people bring me things, food, ice packs, Chips, my iPad. Grammy got me a watering can!"
so, I guess he does not get bored! He is waited on all day!

Sleep well, xoxoxoxo Loren