MR SIX!!

HAPPY 6TH BIRTHDAY OSCAR!

We are so proud of you and we love you more than you will ever know.
Today marks Day 72 of being steroid free. It has been a rough five years for you, this year in particular but you just carry on and continue to amaze us with your bravery and all that you do.
It has been wonderful watching you running around playing with your friends with a big smile on your face today.
Keep being strong, keep being courageous...keep being you!

Love Mum and Dad xxxxxx

Our six year old!

Legs - Looking amazing!

Arms

ANOTHER WEEK DOWN

It has been incredible to see the change in Oscar over the last week. Obviously his skin has has healed immensely but in terms of his energy levels and the way he is feeling within himself we have really seen some positive signs. The first being he has started talking back and being cheeky! He has the energy for this and it is so great to see him behaving this way.. I will probably disagree with this as the novelty wears off! He comes home from school wanting to play. Beforehand it was clothes off, sitting on the couch wrapped in towels watching t.v.  His body is adapting to the drugs thankfully. It has been so upsetting to see him with no energy. I was very worried that he would be like this the entire time on methotrexate. Sunday is usually his down day where he's completely wiped out however last Sunday was a normal happy day for him so fingers crossed this continues. We have tried the sedating antihistamine that the specialist gave us but it doesn't seem to do much. I didn't expect it to. Oscar has had a flare up this week and I think too much soy could be the reason. This is the worst his skin has been in two months. Compared to what it previously would have looked like, we really cant be complaining!
Two nights ago the Sloan's got barely any sleep.. Even Charlie woke four times! Yesterday was a blur. I don't know how we get through those days! I gave Oscar one of the sedatives last night as he hasn't had any in over a week and he slept four hours in a row. Then woke every two hours after that but only briefly. This is a good night for him and thankfully Harry slept well too cuddled into Andrew all night. I think we all feel a bit more human today than yesterday!
Harry is doing well. Nights are the worst time when he itches on and off all night. He has good days then days where he seems to be terribly itchy. I'm not sure why, maybe depending on where his skin cycle is at? He's shedding something shocking at the moment and every time you change his clothes dead skin drops everywhere. After the bath there is a layer of dead skin sitting on the water.. Gross! This is a good sign as it means his body is working to get rid of the damaged skin. No matter how many times I moisturise him it doesn't seem to help. This week we have had to bandage Harry's wee hands in the night to stop him from hacking his skin. He thought this was great for a few nights but
the novelty quickly wore off. I have also bandaged his wrists too as he keeps drawing blood with itching so this has helped to protect his skin. As hard as it is to see him this way I know we are doing the right thing. He's more happy than not thankfully so I know that he is going to get through this,
sooner rather than later I hope!

Harry with his 'Boxing Gloves'

Wrapped in towels having cuddles with Mum

All bandaged up

Harry's dead skin all over the kitchen floor!

INTRODUCING CHARLIE

Everyone else in the Sloan family has been introduced and now it's Charlie's turn. Don't worry-Charlie doesn't have eczema, however Charlie feels the impact of having two itchy brothers with eczema. Our wee Charlie bear is a quiet natured, caring wee guy- don't get me wrong,  he can be a wee roughian too but generally he is a sensitive wee soul. Charlie can often be found walking to his room at night for bed with a handful of treasures he has collected on the way to take to sleep with him. Some of these have included Lego, wooden spoons, a hammer and anything he can swipe on his way!
Charlie once said he wished he had eczema like Oscar. I explained to him that Oscar gets very itchy and that eczema hurts him. The very next day Charlie woke up with a tiny patch of eczema behind his knee..his wish had come true! He was so excited so we had to get all the special creams out and make a big deal of his patch of eczema so he felt included. He helped to put the cream on and I think he felt very special as he wasn't missing out!
Sadly Charlie has learnt that when I'm stuck on the couch with Oscar or Harry, he takes himself away to do his own wee thing. Usually this is playing with duplo or Lego. He will entertain himself for long periods of time. He doesn't pine for my attention or try to do something to create attention, he just sits quietly playing. Of course I talk with him but some days I certainly haven't been able to sit and play with him and this makes me feel terribly guilty. The thing about being a Mum is the mother guilt is always there! Charlie is now at Kindy for three days a week and he loves it. It is great knowing he is there interacting with children, learning and being stimulated- something I haven't been able to provide for him over the last while. As Oscar's skin has been healing Charlie has observed and noticed that things have got better for his big brother. A few weeks ago he exclaimed "Oscar you have skin now". I guess Charlie only knows Oscar as having red skin! He has also
commented quite a few times lately "Oscar your skin looks so good". I'm not sure if he is overhearing
 us then repeating what we have said, quite possibly but still it is lovely to hear. The saddest thing we have heard Charlie say is "I'm the only well child in this house". Gosh what a strong statement from a wee three year old. Both Andrew and I make a special effort in the weekends to do something with Charlie out of the house, one on one time with him.
 With Oscar having more energy now this means Charlie and him have been having some lovely
moments playing together outside running around, this has been wonderful for not only them but for Andrew and I to see. I'm sure they are going to have a lovely Summer together getting up to
mischief!
Hopefully Charlie will get to read this one day and know that we always tried the best we could to
share our time and love between all three boys. It's certainly not easy finding the balance when two
out of three children demand and need your attention to help them feel comfortable. However we love all three of our boys so very much.. To the moon and back xxx

Our wee Charlie Bear

Collecting treasures

Charlie asleep with his soft toy cat 'Pirate'

ONE DAY AT A TIME

Well poor wee Harry is in the midst of what we believe is topical steroid withdrawal. He is red and rashy everywhere and he's not the happy active wee guy wee know. He fell asleep cuddled up to me on the couch yesterday morning and every time he stirred he cried. Thankfully he loves the bath so he's happy to spend time soaking in it however when it comes time to applying his creams he screams and cries "Don't you dare Mum!". I feel terrible putting them on but I know it has to be done..many times a day! He is easily distracted which is great and before long he is off playing before another round of itchiness.

Seeing Harry the way he is gives me the strength to see this horrible journey through. Topical steroids were masking his eczema originally. Now they have become the problem!! They have poisoned both Harry and Oscar's bodies-sadly we didn't realise until this year. I'm optimistic Harry will bounce back quickly. I know if we continue with topical steroids Harry could potentially get as sick as Oscar. When this is over our children will have a childhood that isn't dictated by eczema and allergies. These will not define our children any longer!

So we will continue to battle this out, one day at a time.

Oscar is looking great, we have had quite a few people comment over the last couple of weeks how good he looks, however we are no further ahead with his sleep-lack of that is! Andrew and I were both a bit naive in thinking once Oscar's skin cleared he would start sleeping again. Oscar hasn't had a sleep routine since he was one! He itches in his sleep which wakes him or he wakes up then itches. The other night he woke 12 times. The doctors now believe he needs help to sleep and through a psychologist, we are being prescribed sedatives. These come with their own issues in terms of addiction so we will have to be very careful. Oscar has also had a nasty cough for the last few weeks he hasn't been able to fight. He is on antibiotics to help his body recover-Quite a concoction of drugs!

Oscar often complains of his whole body being tired which I'm assuming is from the methotrexate? We have another specialist appointment next so we will talk about this with him.

It certainly has been a challenging year for Oscar but I finally believe we are on the right path to getting him steroid and drug free.

A very long night for us last night playing musical beds! I started off sleeping with Oscar then swapped with Andrew as Harry was very unsettled, he was too itchy to sleep so by 1a.m we were up watching t.v snuggled up on the couch until he finally fell asleep. I was very close to putting him in the bath in the hope of the water soothing him. We got back to bed around 2a.m then Oscar woke yelling and tantruming because he wanted me to be sleeping with him..so Andrew and I swapped again! 

It was a day of survival for both Andrew and I but yet again we somehow manage to get through the days unscathed. I put this down to many years of experience!

My eyes are starting to blur so I will quickly finish with a few common phrases from our wee Harry.

"Oscar's itchy"

"Pap(pat) me Mum"

"Don't you dare"

"Don't do that"

"Sore skin"

"Ouchy Mum"

Soaking in the bath

Itchy and ouchy

                                                           Looking great!

Cuddled up to Mum snoring! 

Harry's blood stained top.

ONE HEALING, ONE STARTING THE JOURNEY!

I was supposed to be working for the school holidays but we made the decision a week prior to the holidays starting that it wasn't fair on everyone for me to go away for two weeks. Last time I went Oscar didn't cope so well and now with Harry going down hill it wouldn't be fair to Andrew to be up all night long to both of the boys. The holidays have come at the perfect time for Oscar to get some well needed rest and sleep ins. He has been waking anywhere between 8a.m and 9.30! The nights are still long but we have had a few nights of Oscar waking the usual amount of times but not scratching for as long. I'm still waiting to hear back from our last doctors appointment from two weeks ago about what else can be done to help Oscar sleep. I have left a message to remind her and still no phone call. In all honesty, this doesn't surprise me!
Oscar has a cough at the moment that he can't seem to get rid of. He has had a temperature four out of the last five days. It seems to spike then go down then spikes again. His body is obviously working overtime to try and get rid of his cough. I'm assuming it will take his body longer to fight bugs with his immune system being suppressed.
Oscar's skin is looking amazing. The backs of his legs are still healing but compared to a month ago they look great. Oscar is so much happier within himself now and when we got out of the car to play at the park the other day he looked at the other children playing and said to me "Mum I look like a normal boy today". I asked what he meant and he replied "I don't look like an eczema boy". As he ran off to play this made me wonder about the timing of what he had just said. Has he felt self conscious about his skin more than we had realised? We have previously not had mirrors at Oscar's level and never showed him photos of himself but we have been showing him lots of photos of this journey and the photos over the last week have put a smile on his face. I can't wait to see Oscar's skin in a months time..it might be completely eczema free!
 It has been very warm and windy the last couple of days- the perfect weather to put Oscar in full flare with the combination of heat and pollen in the air. His eyelids have been puffy and a few wee red blotches on his face have emerged but the rest of his body is fine. It is so reassuring to see that the drugs are doing what they should, making Oscar far more comfortable than he has ever been.
Today marks Day two for Harry's journey of Topical Steroid Withdrawl. I have knots in my stomach thinking about what we are in for with our little man. His skin takes about three days to change for
the worst. Thankfully he loves the bath as he might be spending the next few months in it!
I am hopeful that he will bounce back quickly and that I have the strength to see him through this.

Oscar's arms

Check out how clear Oscar's back is

The back of Oscar's legs

AN EDUCATIONAL POST

I thought I should explain a bit more about Topical steroid withdrawal as this is what my babies are suffering from. Once upon a time they had 'normal' eczema...now they have steroid induced eczema. This is why we are not using steroid creams anymore, the damage has been done by them and now we are working hard to get our children well again. It will take time but we will get there. Oscar climbed to the top of the ladder in terms of steroid potency and they no longer did their job-this is why he is on Immune suppressants. Last week we were prescribed Dermol-a very potent steroid cream for Harry. I told the doctor I didn't want it and she said it's best to use it for when the patches of eczema come up because if we don't it will flare up even worse and this will be a knock on effect to the rest of his skin. Harry doesn't have patches of eczema, he has a bright red rash all over his body. It took three days to appear after ceasing steroid cream! You have probably guessed that I didn't get the prescription filled. The pharmacist put a big fat line through the Dermol, I felt quite satisfied seeing this! We have not completely gone cold turkey with Harry just yet... We will be next week though.
For anyone following this blog or for anyone that stumbles across it I want you to know that we love our children very much. We would do anything to take their pain away and for them to not have to go through this. We haven't made this decision lightly. Oscar has been dealing with this for five years and had we known what was actually happening to his wee body then this whole process would have been over and done with a long time ago. We have done everything possible to get him better over the last few years and nothing has worked. We didn't know that what we were dealing with was bigger and nastier than eczema. With the help of the Immune Suppressants Oscar is coping reasonably well with steroid withdrawal. The backs of his legs have the most healing to do. He has come such a long way in the last few weeks. Mentally he is exhausted, grumpy and irritable..not our usual happy wee guy. I believe this is possibly a combination of steroid withdrawal and the methotrexate. Harry didn't reach the highest step of the ladder for steroid creams and hasn't been on them for as long as Oscar so we have no idea what we are in for with him..I will let you know though!        

To family and friends close to us, please believe what we are doing is the right thing for our children. Please accept that we will not be using topical steroids on our children as they are the reason why our children are suffering. We need your care and support more than ever right now.

Below is some more information on Topical steroid withdrawal.
Just this year, submissions have been made to parliament to get Red Skin Syndrome recognised as a medical condition in New Zealand. Hopefully it is only a matter of time before those who are suffering can get the medical support required to help them through this.


What Are Topical Steriods?
Topical steroids are also called topical corticosteroids, glucocorticosteroids, and cortisone. They come in many different preparations including creams, ointments, oils, gels, and lotions. Some are 
sold over-the-counter; others require a doctor’s prescription.

What Is Topical Steroid Withdrawal?

Topical Steroid Withdrawal is the process by which a patient ceases all application of topical steroids. The withdrawal process will often result in a rebound phenomenon that is painful and difficult for the patients.

How Do I Know If I'm Addictd To Topical Steroids

Signs of topical steroid addiction include

1) Inflammation of skin does not reduce despite repeated application of TS.

2) Skin becoming more inflamed after TS application.

3) There is a continued need to use stronger and higher potency TS to maintain your current skin quality and to keep your inflammation symptoms under control.

4) Rebound phenomenon, or more commonly known as Topical Steroid Withdrawal symptoms, occur 

when TS application is ceased.

What Are The Symptoms of Topical Steroid Withdrawal?

Common symptoms experienced (and not exhaustive) are:Burning red skin, oozing, puritus (systemic itchiness), flaking skin, dry skin, thinned skin, inflamed skin, edema, temperature dysregulation,
insomnia, weight loss, hair loss, swollen lymph nodes, nerve pains, hypopigmentation,,  stretch marks, growth suppression, adrenals suppression (Hypothalamic-pituitary-adrenal axis suppression), loss of appetite, fatigue, depression, heightened allergic sensitivity to food and environment, glaucoma, hyper tension, Cushing’s disease, hypocalcemia.

These TSW symptoms lessen in intensity, severity and duration over time. Rebound flares of severe intensities are noted to have occurred in later stages of the recovery periods.

***Information taken from  www.saynototopicalsteroids.com

Lastly a couple of photos. One of Oscar's legs and one of Harry's skin. Sorry for such a novel! 

INTRODUCING HARRY

Harry hasn't been mentioned earlier, possibly because I haven't wanted to accept that we have two wee men that are struggling with eczema! I wish it was an easy fix with some creams and avoiding certain foods but just like Oscar we are going around in circles trying to figure out what's happening with Harry's skin. Maybe this blog page should have been called 'Our itchy boys!'
Harry is the littlest member of our family, he is turning two next week.
Harry has had eczema from around six months. I introduced formula to him and a few days later I got him from his cot in the morning and he was covered in an eczema rash. I took him to the doctor and he said don't change anything! ...and here's some steroid cream. We got a Rast test done a few months on and it came back positive to only cats. I had assumed already that dairy is an intolerance for him as the eczema kicks in after a few days of consuming dairy. So Harry has been dairy free from early on. However he has still been battling eczema. Things have been manageable with the use of steroid creams from the specialist but this year he has got worse. We have moved this year to a very dry climate so that won't be helping but it is also more than this. He is a mini Oscar with a red 'aura' on his face and body.. The last couple of months we haven't been able to keep on top of his eczema, even with steroid cream. So I'm not sure where this is heading for Harry. Steroid withdrawal? Immune suppressants? All I know is he is very uncomfortable and not sleeping either!!
How on earth is the Sloan family functioning right now?!! Purely on love perhaps!
Andrew and I are having night about with Oscar. Most nights Harry ends up in bed with whoever isn't with Oscar. Actually Harry has only ever slept through a few times and I'm guessing this is because of his skin. Thank goodness Charlie is an amazing wee sleeper.
Oscar had his usual three, maybe four hours sleep lastnight. It is a beautiful day today and he is on the couch snuggled up to me wrapped in towels. Sunday seems to be his low day, a side effect of the methotrexate I'm guessing. His skin is looking clearer but he is still intensely itchy.
I'm feeling pretty low today too, a combination of being tired and accepting that Harry's skin is possibly heading the same way as Oscar.  However we will do everything it takes to get the baby of our family itchy free too.

WISH CHIP

Last night we had nachos for dinner..well mince with a few nacho chips. Oscar was very excited as this is a food he hasn't had in a long time and even more excited he had a wish chip on his plate. For anyone that doesn't know, a wish chip folds over on itself like a semi circle shape rather than flat and circular! If you are lucky enough to come across one then you get to make a wish! I heard Oscar whispering to  himself "I wish I didn't have eczema". He then told us his wish and Charlie also said "I wish you didn't have eczema too Oscar". What a sweetie.
Before bed Oscar was itching like mad and asked me why his wish hadn't come true. Hearing this broke my heart but I had to think fast and told him that not all wishes can be granted straight away so he would need to continue to stay strong until his wish comes true.
Oscar found a wish chip in a bag of potato chips one weekend last year and wished we could go on holiday to Wanaka. The same day Andrew got a phone call for a job interview in Wanaka - Oscar's wish came true! Pure coincidence but Oscar remembers this so I guess in his wee mind wish chips really do grant wishes!
Oscar's body flared up a couple of days ago so he is still recovering from this, however his face is looking quite clear and the swelling around his eyes has gone down even more than last week. We are week four on methotrexate. The best way to describe how I'm feeling is you know when you have something excting to look forward to and time then seems to slow down considerably? It takes 6-8 weeks  for the drug to work effectively and although we are starting to see some clear skin we still have a long way to go. Oscar certainly isn't any less itchier. In fact as I write this at 11p.m he has managed an hours sleep and this round is an hour into itching. This will be our night on and off until around 4.30-5 when he finally falls into a deep sleep for a few hours.
On a happy note Oscar has managed four school days in a row. He went in late today but the last three days we have made it to school before the bell..this probably hasn't happened since February!
Right my eyes are getting blury. Time to get my wee man to sleep.

HEALING

It has been another rough week for Oscar with intense itching and burning 24/7. He hasn't been able to regulate his body temperature so one minute he is freezing cold wrapped up in towels and blankets then he's burning hot and sweating! He's still shedding lots of skin but I see this as a great sign of healing.Not many school days again and sadly Oscar didn't get to run the school cross country.
Oscar's blood tests came back fine so he is now on 7.5mgs of methotrexate. Side effects minimal this week. Today he woke up happy and played outside straight after breakfast, although he did get tired quickly. He had moments of quiet time inside then outside play then back to the couch for quiet time and itching. Sunday seems to be the day he gets knocked around a bit from the drugs. Although It has been lovely seeing him want to play outside today!
On a positive and exciting note we started seeing changes in Oscar's skin on Friday. His face looks white and his body has patches of white shining through. Every so often I look at Oscar and I think he looks so pale, like a wee ghost. We are just not used to seeing him white. Oscar's little brother Charlie said yesterday "Oscar you have skin now!" Oscar even said " I don't look like an eczema boy. I just look like a boy with scratches." We are so excited to see what the next few weeks bring and very relieved that the withdrawl of steroids hasn't been the nightmare I had prepared myself for. Three weeks steroid free, this is huge for us!! I am so proud of Oscar getting through the last month. He has been very sore and uncomfortable, I can't begin to imagine the itching and pain he's felt but I whole heartedly believe he is now over the worst. This means after five years of being on this journey we are finally on a path that will lead us to a healthy, happy steroid and drug free boy!

DAY 16 STEROID FREE

Last Saturday Oscar was very low in energy and didn't get out of bed until 10.30! The rest of the day was spent on the couch. He was very quiet and lethargic, this a side effect of methotrexate often called 'methotrexate fog'.On Sunday he was much happier thankfully. So far this is the only side effect that is visable to us. It has been a very long week for us though...

Day ten things started getting uncomfortable for Oscar. He has multiple areas on his body that are red and burning. He has had diarrhoea most of the week and his sleeping is erratic. A small doze in the evening then awake on and off from then on until four-five in the morning, finally sleeping for a few hours from then until eight ish. He is terribly frustrated and upset during the night with many outbursts and screams of frustration and discomfort. The sheets are covered in blood and shedding skin to the point of them needing to be brushed off a few times through the night. Oscar suggested we change them in the nights but I just don't have the energy to do this! Once daily is more than enough.
The nights have been saved with You Tube! About 3a.m Oscar is just exhausted but obviously can't sleep so watching something on the I.Pad distracts him for awhile. At night I want to reach for the steroid creams then as day breaks I'm proud I didn't cave into temptation. Oscar has only made it to school for a day and a half this week but on Friday he was finally in good spirits and quite happy.
Yesterday Oscar was very brave having his blood tests and didn't even get upset! If the test results are fine then the dose of methotrexate will increase next week by 2.5 m.gs.
It was a very long night for Oscar and Andrew lastnight as Oscar didn't fall asleep until 5a.m. He didn't get out of bed until 2p.m today, only because Andrew took him for a drive to get him out of the house. He asked Oscar if he wanted to go to Mitre 10 but the itchy wee fella just wanted to come home! He got out of the car and started to cry. I just can't imagine how he is feeling. So yet again we sit on the couch and I 'pat' Oscar while he watches a movie. Fingers crossed we start to see some positive changes over the next few weeks with his skin. It's heartbreaking watching him so miserable, uncomfortable and exhausted.

Tonight I showered Oscar and it felt like I was torturing him! He screamed and cried and said it stings and burns. I don't doubt this for a second! I finally got him all snuggled in bed and he started to cry telling me he couldn't go to school tomorrow as he hasn't done anything this weekend so he won't have anything to talk about at sharing time. I didn't know what to say to him! We discussed some things he could talk about and I thought all was good then he got upset again saying he was scared he would have to go running at school as it will hurt him. This from a little boy who loves school, loves running around and is very much an active 'outdoors' boy. Obviously he is very uncomfortable and
anxious at the moment. We are very thankful Oscar's school and teacher are very supportive with everything that is happening.
Getting Oscar out the door in the mornings for school is nearly impossible but I suspect it is a great
distraction for him and although he is exhausted I believe it's good for his well being to have a sense of normality, routine and for him to play with his friends...
Wish us luck getting out the door tomorrow morning, we will need it!

.

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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