A POSITIVE NOTE TO STEROID CREAMS

well not the steroid cream themselves but the tubs they can come in....

By playing with these tubs, lots of learning is actually happening!
Learning about Gravity and balance, cause and effect,weight
Increases hand eye co ordination
Maths concepts such as size,order and problem solving
Hmm...Spot the Early Childhood teacher!!

THE MOTHERSHIP IS DOWN!

So now I have hit rock bottom, up all night last night with one very sore ear. It turns out a very nasty ear infection and full of the flu. I can't remember the last time I felt like this. Thankfully Andrew took the day off to take over while I went to the doctors and got  some much needed sleep.
We have been waiting to hear back from the doctor about sleeping pills for Oscar. He has never prescribed them for a child before but can see the need for it. However after consulting with a paediatrician who believes sleeping pills shouldn't be used for children we won't be getting them. The paediatrician isn't surprised that phenergan and histafin don't sedate Oscar enough to give him relief in the night but had a very interesting idea to help...
Put Oscar In damp pyjamas then put dry pyjamas over them, then bandage his ankles and wrists so he can't get to his skin. This is possibly one of the most infuriating and ridiculous pieces of information I have heard to date. I understand wet wrapping but with pyjamas x2 for a little boy who prefers to be naked 24/7 this would not work. He also isn't a baby, I already have a vision of him standing on the bed or floor jumping up and down literally ripping the pyjamas off!
So we continue to be let down again by the 'medical professionals' who don't understand what Oscar is going through. I truly believe sleeping pills would speed up his healing. He has been waking at least 10 times a night and pretty much just doses, falling into a deep sleep around 4 or 5a.m 
So now we wait...3 weeks until we see the specialist to put Oscar on Immuno suppressants. I'm still finding this hard to stomach but it really is our last option.

TEARS AT BEDTIME

Last night was a rough night for us with all 3 boys. Andrew was up and down to the two little ones with their coughing all night long and I was trying to comfort Oscar as much as I could without much success. He was trying so hard to fall asleep but was far too itchy and kept grizzling and yelling as he was so uncomfortable. Patting usually helps to soothe Oscar but last night I couldn't help him-the worst feeling in the world as a parent. By midnight he started sobbing ..so did I. Oscar doesn't complain and barely cries with everything he puts up with so when he does cry you know he's feeling shit! In the still of the night drifting off only to be startled by the hacking sounds of skin being teared apart and outbursts of discomfort, so we cry together and cuddle up while I remind my wee man how brave and strong he is and finally he nodds off around 1a.m. Not a deep sleep at all, 20 minutes here and there and wanting to keep getting up as he was uncomfortable.
Today is a very quiet day watching The Little Rascals movie and snuggling up with my three wee men while Andrew tries not to fall asleep at a literacy course for work.

HAVE YOU TRIED THIS?...

Hydrocortisone 
Eumovate
Advantan
Dermol
Aristocort
Locoid
Diprosone 
Prednisone Oral steroids- Many rounds of this 
Antibiotics for infections

Natural products or other things tried:
Calendula cream
Xma Ease
Manuka Paint
Pot of Gold
Coconut Oil
Aveeno
Paw Paw cream
Various tincture drops and creams to help relieve itch
Oatmeal baths
Salt water from the beach..worst thing I did! I can still hear his scream to this very day

*This year we have been working with a naturopath, dietician and also an eczema clinic in Auckland.Click here to see Lisa Welbourne's Roguh Patch F.B page We are currently still 
working with Lisa and she has been so supportive, caring, honest and ultimately wants to 
see Oscar well again like us. 

To date Oscars allergy tests tell us he is allergic to
Dairy, eggs, soy , wheat, peanuts 
Dogs, cats, dust mites, tress, grass, 

He has also had an IgG test which measures intolerances 
Out of 92 foods Oscar is reacting to nearly all of them, infact his safe foods are as follows
Meat
Chicken
Coconut
Fish
Berries
Bananas 
Apples
There are many foods Oscar can still have that he had low to medium reactions to but these are on a rotation system so the foods don't build up in his system causing flares.

Supplements Oscar is on:
Omega Fish oil 
Slippery Elm
Vitamin C
Magnesium Powder
Magnesium Spray
zinc drops
Olive leaf drops
Eczema Shield
D3 drops
Oscar also has daily antihistamines
We use children's borage therapy as a moisturiser 
The next step is to put Oscar is Immunosuppressant drugs- this will dampen his immune system and help him from flaring to pretty much everything. The specialist believes Oscars allergies are not real and that he just has an overreactive immune system..I'm not so sure I agree, I guess time will only tell! 

THE IMPACT OF SEVERE ECZEMA ON OUR FAMILY

You all know what it feels like having an itchy bite. Now imagine itchy bites over your entire body that don't heal up. Just when you think think they are, they come back with a vengeance, sometimes getting infected making your body even itchier! This is Oscar's life every day. 24/7 He barely sleeps as he's so itchy. Adding heat to his wee body makes this worse. He sleeps in nearly every morning which makes for a mad rush to get us out the door in time for school...I don't have time to clean as I go as I make sure 3 wee boys are dressed, and myself! Adding to this the breakfast routine along with lunch boxes. Oscar has one crazy diet which I will write about at some stage so cooking fish or sausages first thing, making smoothies, along with all his medicines he has to have before getting out the door AND applying moisturisers to his body-This is the most time consuming part of the morning. Sounds simple right? Slap on some cream and your done. Nope, it doesn't work like that in our house. Firstly you have to wash your hands then dry them completely. We have to put a towel in front of the fire and I wait as I watch Oscar meticulously takes off his pyjamas and dressing gown..but wait there is now a knot in the dressing gown so the cream I already have on my fingers ready to apply has to be wiped away and then we are ready to start, 
carefully applying cream on starting with the face to the feet....then we have to wait until it
fully absorbs before clothes can go on, in the mean time the clock is ticking. No wonder the 
house looks like it has been burgled when I get back from school drop off! As soon as Oscar 
gets home from school he strips off as he is more comfortable being a wee nudist!
- The lack of sleep in our house makes it hard to function on a daily basis but somehow we survive, only just!        
- An eczema child becomes public property! Everyone has a solution to eczema.. although 
no one has found one for us!!'
- People stare! This is the most heart breaking thing for us 
- Random strangers stop us in the supermarket or out in other public places asking "Does he have eczema? Have you tried.... 
- I'm pretty sure I'm getting R.S.I in my hands!
- Our 2 other wee boys often miss out on the cuddles and time they deserve as sometimes Oscar is one on one
- Financially the cost of trying all the 'Solutions' we have been informed about by the general public and also things we have researched, along with Oscar's diet have been a massive hit to the bank account!
Oh crap, I could write a whole book on the impact of eczema but will finish it off with some 
quotes from our wee man that are sadly etched in my head forever

"People will think I am silly when we go on holiday because I have eczema all over me"
"I wish I was Pinocchio because he is a wooden boy and doesn't get itchy"
Looking at the mirror at the hairdressers Oscar inspected his face and said "I have lots of eczema on my face Mum". I asked him what it feels like and he replied "It just feels normal"
"I feel sad because I have eczema"
"Why doesn't Charlie and Harry have eczema like me?"(his little brothers)
"I don't want to be itchy anymore"
"How can we fix me Mum?"

FROM THE BEGINNING

I could write pages and pages about the last few years but I will try to keep it brief-I don't want to put anyone off that's reading this already!
Oscar was a happy and healthy baby. We felt so blessed to have him in our life and everything was just perfect for our wee family. Around 9 months old we noticed small patches of typical eczema on him and we were prescribed hydrocortisone steroid cream to help.  This magically erased any signs of eczema and this routine went on for a few months. At 18 months old Oscar had a massive flare up from head to toe and things got worse from here. He was continually infected due to scratching his wee body to bits. We were continually prescribed stronger and stronger steroid creams and trusted what we were being given would be fine to use. Why would we think otherwise when its dished out to so many people, so many children. 
Fast forward 4 years and we are still in the same situation! We now believe Oscar has Red Skin Syndrome. It appears our wee man is addicted to steroid cream and can't function without them. We got a small taste of this last week after not using creams for three weeks. Oscar barely moved from the couch, he could hardly walk as his body looked like it was burnt,  he was in terrible pain and didn't eat. Two days of steroid cream and he magically slept all night(the first time since February!) and his body looked clear and beautiful  again...3 days later he is red and itchy again. We are stuck in a trap, a very nasty, itchy, 
painful one. We need to get Oscar well again. It breaks our heart seeing him so uncomfortable and itchy every single day-every single night. Sadly he is going to have to go through more pain to get better again.
Our family motto is 'Never Give Up" - We will be well and truly putting this to the test over the next while!