LITTLE YELLOW PILLS

Day 6 steroid free and Oscar's skin is getting itchier by the hour! Last night his eyelids became puffy and his body had a wee sprinkling of eczema all over. We decided to give him his first dose of Methotrexate, this will help suppress Oscar's Immune system in the hope that he won't flare as much. We have been told he will need to be on this at least for a year. This will give his Immune system time to 'reset' itself hopefully.
As you can see by the photo these pills are so tiny. How can something so tiny be so strong! The pharmacist told Andrew to make sure no one pregnant even touches the pills...I'm sure Andrew was very quick to inform her this wouldn't be an issue!
Oscar didn't want to take his new medicine, he screamed and cried which is very unusual for him. I watched him swallow the pills and burst out crying! I didn't let Oscar see this though. Such a horrible feeling watching your child put toxic, chemotherapy drugs into his wee system. I know it's low dose and I know it's common practice for severe patients but when it's your child it's not a nice feeling. All the what if's etc..I can't think like that though, I have to be positive for Oscar and I have to believe we are making the right decision for him as we have run out of options. This was Option 'Z'.
Lastnight was an unsettled one. Oscar woke numerous times but only briefly each time. He was tired this morning and asked when the new medicine will make him feel better. His poor wee face is red and his wee eyes are all puffy and swollen. The drug takes 6-8 weeks to take complete effect but some people start to see results after a couple of weeks. So next Thursday Oscar will take another two pills, then will need a blood test on Saturday to check his liver and kidney function. If this is fine then he will start the following week on three pills weekly. He also takes half a folic acid pill half way through the week, this can help counteract potential side effects. We are also buying some oregano oil drops as this will hopefully do the same.
So lots going on right now in Oscars wee body. Fingers and toes crossed that the next couple of months brings less itch for our brave boy.

A SMALL GLIMMER

Last week was a crazy week with Oscar having a high temperature bug for 5 days. He ended up having the whole week off school! We were supposed to be starting the immune suppressants but the pharmacist said we need to wait until Oscar is over the bug. Then something quite strange happened. Over the weekend we noticed Oscars skin getting clearer by the day. We have been staring at him..and touching him in disbelief!! We used steroid creams three times last week...this isn't usually enough to help him at all. We are wondering if all the sleep he has had has helped his skin to heal..how could it not! The amount of sleep he had last night equates to his usual amount of three nights worth! Yesterday he told me he didn't feel itchy and wants to now wear clothes to bed. Honestly- his skin had completely cleared all over! The last time he looked this clear was eight months ago for a few days.
Usually after day three of no steroids his skin starts to change..we have made it to day five. However this morning I can see his skin changing for the worst. His back is starting to get rashy and spotty and his face is looking slightly red tinged. He also said this morning "I feel itchy again". I wasn't naive in thinking Oscar was magically cured but I can't begin to describe how lovely, and emotional it was to see him have a brief moment of being healthy..and happy! There were no troubles getting him ready for school yesterday and when he got home from school he wanted to go for a bike ride, do his homework, play on the trampoline..then go for another bike ride after dinner with his Dad! Oscar even wore clothes all afternoon! Usually he gets home from school, takes his clothes off and sits on the couch in a daze watching t.v. This has been a glimmer of what life will be like for Oscar when he is no longer itchy, bring it on!!
We also have a new addition to our family. Woof the dog! Little Woof has certainly put a smile on all our faces. Oscar was scared we would send him away if he reacted to Woof but we are happy to report this hasn't happened.
Now we need to make a decision as to what day to start methotrexate. I'm in two minds..Keep waiting to see what the next week brings, although I'm not sure what I'm really waiting for as Oscar's skin
will deteriorate from here on in. Perhaps we start the drugs tonight? ..... So undecided right now.

OUR HOSPITAL APPOINTMENT

We had Oscar's specialist appointment two days ago. It went much as I expected. We discussed immunosuppressants like we had previously talked about last Xmas then the specialist took a five second look at Oscar's back and tummy and commented his skin is a "Right wee mess". I replied that today is a good day for him. As he was assessing Oscar's skin Andrew asked if he had heard of Red Skin Syndrome. "Yes I have and Oscar does not have that, in fact many people don't believe in it and there are lots of horrible things about it on the Internet". End of conversation!!
This leaves me with many questions. How does he know Oscar doesn't have it? Does he believe in it or not? If not then what does he make of all the blogs and information about it on the Internet? We dropped this discussion promptly, partially because I felt we had been put in our place in that we know nothing about it and that it was pointless to continue challenging him as it would have ended up in a very heated discussion. Honestly, we don't know enough about it ourselves to be able to challenge a dermatologist on it. What we do know is that Oscar has every single symptom of Red Skin Syndrome. Oscar's skin presented with splotchy and spotty patches at the hospital and 24 hours later he is beginning to look red and inflamed and very, very dry after five days of not using topical steroids. It truely is a vicious cycle. I left the hospital with self doubt about everything, wondering if we are making the right decision going ahead with the immunosuppressants and cessation of topical steroids.

After our appointment Oscar had to have another blood test much to his disgust. He did tell me later in the day that it didn't actually hurt him! Once the blood test results come back the script will be sent to us so we can begin the next step of this crazy journey.

Oscar only had a few hours sleep last night(and me!) so he had a home day. I told him he would need to still do some reading, writing and maths. Well before 9 a.m he was sitting up at the table ready to
write...I was ready to go back to bed! However this is not an option having to care for our three crazy boys so the next best option was to make a coffee.
We are back on another stint of steroid creams and will continue to do this until the drugs kick in. Yes we are delaying the inevitable but we are hoping by doing it this way he won't be suffering earlier than needed. To be honest we have no idea what we are in for and what to expect. I wish I did know so I could mentally prepare myself. Whatever happens, we will get through it as a family and we will remain brave and positive for our wee man.

THE SMALL THINGS IN LIFE

We have started explaining to Oscar about the new medicine he will be on and that he will also need to have regular blood tests to monitor blood count, liver and kidney function. It turns out Oscar has a very good memory- last year when he got his blood tests taken for allergies the doctor was reluctant to test for everything so decided to only test for peanut as this had not been tested previously. I pushed for him to add in cats and dogs and a full blood count. The doctor believed that Oscar's allergies would not have changed from the previous year. So when we got to the lab they did the initial allergy test and I asked about the full blood count. The doctor hadn't added this in. Thankfully they were happy to do it but this required another test for Oscar. When the test results all came back positive I went back to the doctor demanding to be tested for everything, like I had initially asked. Away we go again for a third blood test. Everything was positive again..except for dust mites because they hadn't tested for that because the dam doctor hadn't requested it. So off we go again for Oscar's fourth blood test! After that I promised Oscar he wouldn't have to have a blood test for a very long time. Little did I know that I would be wrong. When I explained to him he would need some blood tests he reminded me of the promise I had made, I felt terrible breaking my promise.
Good old bribery has already come into play and the specialist appointment isn't for another week! Oscar choose some new lego yesterday that he has been having a great time building. This is his incentive to keep being a brave wee boy. ..or maybe we just can't help spoiling him!
A couple of months ago when Oscar was having a really bad weekend we decided as a family we needed something exciting to look forward to, a focus for some of our rough days. Initially Andrew and I had talked about going away for a weekend together as a family when Oscar is well again to spoil the boys and reward ourselves for surviving the last few years. I thought somewhere not too far away but  that changed to thinking how cool it would be to go on an aeroplane somewhere- as Oscar is aviation mad! Auckland was on my list as the boys would love the Zoo but as Andrew pointed out the cost of flying us all to Auckland versus The Gold Coast is probably near the same price!! So when Oscar was having an itchy couch day we told the boys our plan, that when Oscar is feeling much better..(and when we have saved enough money!) we are all going to Australia to go to "The place that lights up at night time." This is what Oscar calls DreamWorld, I think he might be getting mixed up with Disney Land as I'm pretty sure Dream World isn't open at night?! The boys are so excited about this and are all already saving money in their wee money boxes. On rough days Oscar will ask if we can watch Dream World on You Tube. So the focus is well and truly working and if it can give him a few moments here and there of having something to look forward to and forgetting about being itchy then it will all be worth it. Actually I think it is something for us all to look forward to. A family holiday away to celebrate moving forward and being happy and healthy .

Last night  I went to our local dairy to buy some bread and also rice crackers for Oscar. They didn't have any but I did find something very exciting. Little teddy bear biscuits that are completely safe for him to eat! Not the healthiest of foods I know but Oscar doesn't really have any 'treat foods' so when I showed him the box his wee face just lit up. So lovely for us to see, and surprisingly the little biscuits didn't taste too bad.

Oscar's skin is being held at bay by steroid cream still. We feel we can't put him through the pain and agony that comes with steroid withdrawal until he starts the Immunosuppressants. In saying that his skin is still red and itchy but he seems to be mostly tolerating this. I refuse to put on the super strong steroid creams...actually they are in the rubbish so I can't!
We are still changing sheets daily as they are usually blood stained and have so much shedded skin on them. It is yet another thing to do in my busy day but I have to admit it is rather lovely climbing into a freshly made bed with clean sheets every night!
Well one week to go until the specialist appointment in Dunedin!

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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!