JUDGEMENT DAY

Back to school this week for Oscar and so far so good. Surprisingly enough we haven't been late yet! I have had to wake him most mornings though but as the term goes on I will let him sleep in. It is lovely dropping him off at school knowing he's happy and not completely exhausted like last year.  Actually Oscar had an amazing sleep last night. The first in many months. He is still itchy in the same places, although it's not getting worse or any better at this stage. 

Harry had a lovely couple of days feeling well. What a relief for us to see him playing, interacting with his brothers, smiling and singing! It's been a long time coming having a wee break through. He even woke up with white legs yesterday! They have since turned red again. It's amazing to watch how quickly his skin can change. A little girl at Oscar's school yesterday asked what the red was on Harry's legs. I said he has itchy ouchy skin and she replied telling me he looks sunburnt! She's so right! I sadly had a run in with a parent at Kindy yesterday too. A lady I met for the first time, a lady who absolutely has no idea how hard we have worked over the last five years to get our children well,  how many thousands of dollars we have spent on private specialists, dieticians, naturopaths, magic potions, supplements, creams, how many sleepless long nights we endure... How many tears we have cried for our boys- and how much we love our children.  Her complete ignorance to our situation shocked and upset me. From the moment we are pregnant we become a target for society to criticise and categorise us. The terrible mother who ate sushi while pregnant, the way in which we choose to birth our babies, the mother who offends the public by breastfeeding in the mall, the mother who didn't try hard enough to breastfeed, taking the supposed easy option of bottle feeding. Why are we so quick to judge other parents when it is none of our bloody business! I guess for the first time in my life I'm possibly looked upon as the neglectful mother, the uneducated irresponsible mother for not taking doctors orders! Topical Steroid withdrawal isn't recognised in NZ. This is a fact, however it doesn't mean it's not real.  There is so much overseas research happening right now into TSW which is fantastic, The USA are as always leading the way with research and development. I only hope it will be recognised here in NZ sooner rather than later, although pharmaceutical companies wouldn't agree with this statement.
We are all entitled to our own opinions and beliefs and if you don't believe in what we are doing is right for whatever reason, I accept that. However I do not accept rudeness, nastiness and right now with everything we have going on, we do not need the stress of this or to be challenged by anyone about what we are doing, whether it be family, friends or self opinionated mothers at kindy. We only want what's best for our boys and believe we are doing the right thing. We are under a specialist who knows we have chosen to not use topical steroids any longer and the boys doctor knows we are not using topical steroids, and we are working closely with Lisa Welbourne who runs an eczema clinic in Auckland called Rough Patch so we do have medical support. We are the experts of our children. Not a GP or specialist that sees us for a five minute appointment every few months. We will get our children well. We are not taking the easy road to do this but it is certainly the right road for our boys long term health.
A final thought for the day...
Don't judge what you don't understand.
Ok not so final words as I can't miss out telling everyone...
On a positive note we have had a proud parent moment that has to be acknowledged. Charlie has mastered riding his two wheeler bike for the first time. It was very precious watching his big smile and listening to his excited giggle. Harry has also figured out the balance bike too-sleeves and all!

We will have our own wee biker gang in no time!

Harry working out a new scratching technique....

Stoked to have mastered two wheels!!!

Harry learning the basics, sleeves and all!!

A FLARE NEARLY OVER

My gosh, what a week for wee Harry. This has been his second week of full flare and he has been so miserable. Itching like mad, oozing, not sleeping, he's had diarrhoea and just wants to be continually held, cuddled up on the couch with his blanket or in the bath so that he can scratch! Yesterday he had a sleep in the morning then after an hour he said he was tired and put himself back to bed. At 6.30 tonight he climbed into his wee bed and said he wanted to sleep. What two year old does that?! I thought this flare would never end! We have also seriously been considering immune suppressants however this morning Harry woke and started talking instead of crying. I knew straight away he was feeling better. He is soo dry and scaly. It actually looks like he has been sunburnt and the skin is peeling. We can pull flakes off of him!.. And this according to the specialists is 'just eczema.'
 The greatest news though is I can see glimmers of white underneath all the dryness. This is the first time I have really seen white on Harry's skin in months. I'm looking forward to seeing how he goes over the next few days. It's been heartbreaking seeing him sick this week. I have been so scared, anticipating all kinds of scary things happening to him as I have never seen him this way. The initial first six weeks were hard too but this is his first big flare since then really as he seemed to be not getting any worse- or any better for quite some time. So this has knocked him around hugely. I'm so proud of Harry for getting through this. I know he is able to get through the next flare and hopefully it won't be as severe. Officially one flare down! Harry has also successfully taken supplements this week without being sick. I'm assuming he's too exhausted to protest so hasn't really put up much of a fight and in turn has figured out they don't taste as bad as he initially perceived! This is great that we can get some goodness into his wee body to help support it through TSW.

Oscar is still itchy in the usual parts however he is drying up and healing, it's just a very slow process. We believe the moisturisers feed his itchy bits. We have done a couple of test runs on our new theory and sure enough the next day he is red and itchy and has scratched the itchy bits more throughout the night and as soon as we stop he starts to dry up again. So fingers crossed he continues to heal. School starts back on Monday. The challenge starts again to try and get Oscar to school on time! For those that may have not read previous posts, Oscar usually sleeps in from anywhere between 8-10 depending on how his sleep during the night. I have a feeling it will take awhile to adjust back into the school routine.
Fingers crossed we are able to have some fun times over the next couple of weeks with the boys, we would love to see Harry tearing around with a smile on his face again!

Mr 2 looking like a wee wrinkly old man

V

Oscar's itchy armpit! 

INCESSANT ITCHING!

Oscar has been extremely itchy the last few weeks. His groin area and under his arms had been the worst areas and it has now spread to behind his knees and stomach. I patted him for 3 and a half hours the other night to get him to sleep! He is yet again constipated too which seems to be a regular occurrence lately. He is getting out of bed most days around 10a.m-thank goodness for school holidays! On the whole he is mostly happy during the day and come night he turns into an uncontrollable itcher. The sheets are heavily stained every morning with blood. It's been very hot here and I don't think that is helping him in the night.
I compared Harry's feet from now and November and was so relieved to see they are nowhere near as red. The prominent red line has slightly faded. This gives me so much hope that we are on the right track! Andrew's Aunty has kindly made us some sleeves for Harry to wear that are lined with satin on the hands,  stopping Harry getting to his hands. I'm not sure why I hadn't thought of these earlier! He is much more comfortable wearing these and a t-shirt and nappy in this heat instead of his p.j suit backwards. Although he is now complaing that he's cold, to the point where he is cuddled up on the couch with a blanket and its 30+degrees! Not being able to regulate your body temperature is also a side effect of steroid withdrawal. We have also been gifted a sample set of sleeves from BAM AND BOO to try for Harry. The hand piece is lined with silk and they look just lovely. Thank you to Toni and the team for offering the sleeves to us. We are truly grateful.
Harry has very cleverly figured out other ways to try and relieve the itchiness. He climbs out of his bed and sits on the floor rubbing his feet against the carpet, sits on his high chair and leans into the back of it rubbing, he does what we call the washing machine on the carpet leaning side to side on his back rubbing against the floor and the most recent and clever solution- Harry opens the pantry door and rubs his wrists against the shelves, to the point now where he has a big welt on his wrist- looks like we will back to bandaging his wee hands too.
I know the holidays are heading towards being over. Not sure how I will cope when Andrew goes back. It has been great sharing the demands of our boys and also seeing more of Andrew has been lovely. We were even  lucky enough to go out for lunch for our wedding anniversary last weekend.  A couple of hours child free makes such a difference! Thank you Uncle Neil for looking after the boys:)


* The above was supposed to be posted last week. We have had a crazy week with Harry and I just haven't had the headspace and energy to look at my blog.
Quick update - Oscar is on the mend this round. All his itchy yucky bits are starting to dry out finally. He's still uncomfortable but is definitely looking better. Harry on the other hand has had a big flare up this week. He is unbelievably itchy. I cannot even begin to explain how intense his itch is. From what I have previously read about TSW the itch is to the bone. Our poor wee baby is in so much pain. He wants to be held all day long and the times we can't do this he is crying. Yesterday he climbed into bed  under the covers and told us he was sleeping. We thought how cute of him. Then a few minutes later Andrew checked on him and he was lying still looking like he might fall asleep. Andrew turned away then heard Harry scratching. Andrew pulled back the covers and Harry had taken of his p.j pants, undone his all In one singlet top and was itching himself to bits! His  stomach oozed all day yesterday. It is so gross! As you can see by the photos it looks like he has spilt a cup of water on himself, but nope it's all ooze. It's not as bad today which is a good sign this flare is starting to calm down. Topical steroids constrict blood vessels and when you stop using them the blood vessels then dilate, pouring out clear fluid-plasma. Poor Harry smells terrible too, this is from the fluid. He has obviously overheard us talking as he announced at the dinner that he stinks! Other than the first six weeks of hell, this has been the worst week for him on this journey to healing. Ha, as I write that I'm wondering if he is actually going to heal and when!!! So much self doubt and guilt creeps in. We have to get him and Oscar through this- and we will. It's just hard to see light at the end of this when everyday seems the same.

2015-DONE AND DUSTED

Well what a crazy year. Our year started on one massive high moving to Central Otago.  This had been something we wanted for the last few years so for it to become a reality is fantastic for our family. It didn't take long for things to go downhill though for two of our wee men. The hardest thing for me this last year has been watching the boys in pain and not being able to take it away for them.
2015 is now in the past which means a new year, a fresh start. 2016 provides hope, this is something I will never give up on. This year will bring a year of happy, healthy children in our family- a year of feeling like a normal family!
I will reflect on a few things from the year. The compassion and empathy of friends, family and even people we don't know has been very touching. I have had many messages from people I don't know wishing the boys well and encouraging us to not give up. Oscar has even had little presents sent in the mail by very thoughtful and caring people.
2015 has challenged me to breaking point.. But I didn't break! I can whole heartedly write that there have been many nights where I wanted to give up, walk out the door and not come back. There were nights where I couldn't handle the boys scratching and itching, the noise would infuriate me to the point of yelling at whoever it was I was patting. Some of you might be thinking how could you yell at your child when they are not well and can't help being itchy. Night after night of listening to that dam hacking sound being as sleep deprived as we are, In a way is a form of torture...similar to the sound of scratching down a blackboard! Perhaps only a parent who has gone through this with their child will completely understand what I mean by this. In the big picture yelling at my children isn't really all that bad.. It could have been a whole lot worse!
I have learnt so much about my children. All three boys are resilient little fellas. The amount of hazy school days Oscar had and according to his teacher you would have never known that he had only a few hours of sleep. Far out- if that was an adult you can imagine the complaining they would be doing. Considering the year we have had I think we have three mostly happy and grounded wee boys.
2015 has proved to me how strong our marriage is. It feels like Andrew and I lead seperate lives. I know our children's health has to come first but when you don't even sleep in the same bed as your husband for over a year, I imagine this could take it's toll on some marriages. This has become our norm and it will be very strange when the time comes for us to sleep in the same bed again.

I started this blog in the hope of helping one other itchy family. If I could achieve this then it would be worth it. I have had many messages this year of people asking for advice or needing support. I'm certainly no expert and can only draw from our experience but being there for others on the same journey makes it not feel so lonely.

Thank you to everyone who has given up a little bit of their time to read our blog. It has meant so much to me that people are genuinely interested in wanting to know how the boys are doing.
A few acknowledgements to make-
Lisa Welbourne from 'Rough Patch'- Your support, knowledge and guidance has been huge in this journey. You have given up so much of your time for us. You are so caring and kind- thank you for everything and for caring about our boys.

I feel so lucky to have such an amazing husband. I wouldn't have been able to stay strong without you Andrew and most likely I would have fallen apart a long time ago! What a great team we are- We really would kick arse in an adventure race being so accustomed to no sleep! Xx

Oscar, Charlie and Harry-Aka 'Porka', I feel very blessed to have you little monkeys in my life. Some days I'm sure you tag team to try and drive me insane. It really would be so helpful boys if you tidied up your toys after pulling them out and leaving them scattered throughout the house and if you would all agree on a few meals that the three of you like-I just can't get meal times right no matter how hard I try! I love you boys so much. I'm looking forward to a fun year together. A year of healing so that we can move forward and continue to create happy childhood memories.

Happy New Year everyone -I hope it's a good one.

MERRY CHRISTMAS

Wishing everyone a very Merry Christmas and hoping it's a wonderful day of fun and laughter with family and friends.
A lovely day here watching our boys faces filled with excitement seeing that Santa had been. Tearing into their presents with anticipation and delight!  Sadly Santa didn't bring Oscar everything he wished for. His wish list consisted of looking like Charlie and having no eczema. However he did get a nerf super soaker that has been a big hit! A very hot 35 degrees though but we managed to have Harry in his nappy for a short while this evening before scratching and even a stint on the couch with just a towel on him after the bath- usually he needs dressed in his wee p.j suit straight away otherwise he scratches until he bleeds. All great signs we are heading in the right direction! Gosh he really has come along way. Oscar's skin infection is still lingering so we are smothering him in Manuka paint in the hope of nailing it soon. The heat isn't helping his itching though!
Right I need to sleep while I can.
Wherever you are in the world, I hope you have had/are having a lovely Christmas.

A rare moment of no clothes! 

A GOOD WEEK FOR ONE AND NOT FOR THE OTHER

A good week for Harry and not so good for Oscar.
We have started using an Avene emollient balm that is helping Harry so much. He's nowhere near as itchy and only slightly dry compared to what he was like. He has even had a couple of hours here and there throughout the week without bandages on! Within himself he is much happier and seems to be enjoying bath time again. Harry had one good sleep last week but I had put that down to the fact he had a cold, however lastnight he had a settled sleep too! It has been a long time coming so hoping for many more of these nights.  We are so relieved to see Harry much more comfortable this week and to see more smiles on his wee face. We were very kindly gifted the Avene cream from a very caring and generous lady who knows all to well about allergies and eczema. Thank you Emma for thinking of us and for your generosity. We are currently working on getting friends in the U.K/America to source some more Avene cream for us as its half the price over there!

Oscar's on another round of antibiotics for his never ending cough. He also has a skin infection that we have been working on healing naturally- antibiotics will help clear this too. As Oscar is on the immune suppressants his body has a hard time fighting infections so this prolongs him significantly in getting better. We have also been prescribed melatonin. Prior to this we have asked two doctors and a specialist about this and all have said no. A paediatrician that our doctors consult with has recommended we try this in conjunction with phenergan. It's still too early to tell however I have noticed Oscar is still stiring lots but not completely waking every time. Once we are on top of the infection it will be interesting to see how the nights are for him.
We are one week into the holidays and it is wonderful having Andrew home. I don't feel so consumed by Oscar, Harry and Charlie's demands! Andrew took Charlie out for the afternoon yesterday for special 'Dad and Charlie time'.  Having us both here means there will be lots of opportunities for one on one time with the boys. I'm very much looking forward to quality time with my wee boys.

Lots of white shining through

  

Finally, A big smile after bath time! 

A GOOD WEEK

As we have finally realised Oscar's body is trying to battle a skin infection, we have been using Manuka paint mixed in with his creams. He looks so much better and the last two nights he's fallen asleep straight away. Previously he needed patted until he drifted off anywhere between 9-10p.m. He  stays asleep for no longer than 1-2 hours but it's a positive sign that he's feeling much better. It's great to see some healing. Harry has had a happy week also. He seems quite comfortable and even managed half an hour with no bandages yesterday before scratching. We can see lots of white skin almost hiding underneath all the inflammation. We just have to be patient! He seems to be losing lots of skin again this week, big flakes instead of the breadcrumb appearance! Harry slept in his bed lastnight from 7-10.45 which is great for him. He then cuddled in with me and was restless for a couple of hours before falling into a deep sleep. I don't feel wiped out today so he must have slept reasonably well.
As an Early Childhood teacher I understand the importance of children's play. When children role play they are making sense of their wee worlds. Children love role playing shops, teachers etc. This week we watched our beautiful boys caring for Baby Daniel- A toy doll. They had turns of putting cream on him, wrapping him with bandages and socks. Initially Harry watched his brothers and towards the end he joined in telling them what to do and helped to pat the doll as it was itchy. Creams, itchiness and bandages are Harry's normality and seeing this played out I believe was comforting for him. In fact the next day after getting his creams on he told me Baby Daniel needed his cream on too. It was such a touching moment for Andrew and I to see all three boys showing their nurturing sensitive sides and also it was sad that this really is their life. Both Oscar and Harry have felt pain like no little child should feel. The worst thing for us as their parents is not being able to take that pain away for them.
I really do think we are over the worst for Harry and we are now waiting for more white days and less red. Oscar has also come such a long way in the last few months. I feel that he has a long way to go as the immune suppressants are masking what's really going on in his body and obviously we are still no further ahead with him sleeping but I think this week has been a turning point for both boys with Harry appearing more comfortable and getting on top of Oscar's infection. Fingers crossed for more of these weeks.

JUST THE USUAL WEEK

I don't know where this week has gone! Harry had another day of white skin. He's no longer burning however he is still very red. We had a very hot day this week and the poor wee guy had to wear his pyjama suit and bandages. We have learnt it's not worth the damage to his skin wearing proper clothes. We went to a kindy picnic a few nights ago and put Harry in socially acceptable clothes and by the time we got there from our house he managed to rip all his bandages off and his arms and feet were bleeding. We must have looked like a sorry sight walking in! We rebandaged him and there were enough distractions there for him to forget about being itchy. His wee pyjama suit backwards is a skinsaver! I sewed some socks into one of the suits for extra protection for Harry's feet. Unbelievably the socks haven't been ripped off yet-the strength of them is probably not so good as sewing is not my forte!
Harry had a really happy day yesterday, the happiest he's been in quite sometime so he is starting to feel better within himself. He has been having great day sleeps too in his bed so another good sign that's he's less itchier. Night sleeps are still erratic though. We inspect Harry's skin every time we take his suit off and comment on how it's looking. Now when I take his suit off Harry tells us"Looks mazing!"
Just the usual week for Oscar. No big itchy attacks but the same consistent itching all night long. His tummy,lower back, bottom and boy bits seem to be the worst parts! His eyes are also puffy again so I not sure if this is environmental or food related..or both!Also another blood test this week and not one tear. Such a brave wee man.
We have just realised over the weekend Oscar has a fungal infection on his penis and testicles at least this is what we think he has.  We needed to make another appointment for the doctors so will get this checked out too.
Oscar didn't fall asleep until 2.30 a.m Friday night and 12.30a.m last night.  When I say fall asleep I don't mean he slept from that time until the morning. That's the time he finally nodded off to get some sleep between waking to itch throughout the rest of the night. We have had a very busy day today with a birthday party, seeing Santa and a play date at friends. Most children would be exhausted and sound asleep by now- It's 10p.m. Oscar is wide awake still sitting on the couch as he tried to sleep but due to being so itchy he just can't.  Hopefully we can get his boy bits sorted and he will be feeling less itchier.
This time next week Andrew will only have one day of work left then holidays for six weeks. This will make a huge difference with both of us home to care for the boys. I can't wait!

A LITTLE BIT OF WHITE

In my last post I wrote how we have not seen any signs of Harry healing, I am so happy to tell the world we have had a whole day of white skin this week before it turned red again in the evening. The shedding Harry is doing is unreal. I'm fascinated with the shedding. Harry had two bath yesterday and  both times there were huge amounts of dead skin in the water and when we take off his pyjama suits mass amounts of what looks like dandruff falls from his body. I forgot to bandage his hands up yesterday and he hacked his wee feet to bits. All that healing ruined within seconds!

Harry gets terribly upset at nappy changing times and when we put cream on him. Understandably he screams and cries. Andrew has a sore ear at the moment from Harry screaming in the nights cuddled up to him. He needs to go and see a doctor however in the mean time he has protection- ear muffs!! Actually when Harry was a baby I wore ear muffs from time to time some nights on the couch feeding him for hours on end. His cry is terrible! Harry is having a very happy day today and so far quite comfortable. Very reassuring to have brief moments of this and hopefully there will be more to come.

Oscar is still itchy like anything in the night. To look at he looks great but there is still lots going on in his wee body. He had a massive itchy fit two nights ago and didn't fall asleep until ten and only for brief moments throughout the night. He begged and pleaded for the sedative pills to make him fall asleep as he was just beside himself. 3mg of diazepam didn't help so back to the drawing board! Oscar has another blood test next week so I will make an appointment to see the doctor too. 

Today marks three whole weeks of Oscar attending school without a day off, a first for him. There were a few late starts to the school day but this really is huge! I'm so proud of him. 

I had my first ever panic attack last week! A combination of frustration and tiredness just hit me. I was hyperventilating and it felt like my heart was going to jump out of my chest! Andrew wasn't home and thankfully the boys had just gone to bed. My wee friend Woof cuddled into me the whole time, he just new something wasn't right so I patted him until I calmed down. I haven't had one since and hopefully it doesn't happen again. It was horrible not feeling like I was in control! Sleep deprivation is slowly turning me into a crazy lady. 

Not long until the school holidays now and things will be much easier having both Andrew and I home. I'm counting down the days!

24 hours worth of skin shedding!

Shedding! 

SOME DOWN TIME

The last week has been much the same with Oscar and Harry. Long itchy nights and if Harry isn't eating he's usually crying! I am working hard to make sure his wrists, hands and feet are bandaged as much as possible throughout the day and night to prevent further damage to his skin. Harry's very good at managing to undo the bandages so socks also get put over his hands. Sometimes he will happily tolerate this and other times he will try and scream the house down in frustration wanting them off to get at his skin. I have just figured out a way today to stop Harry from getting to his stomach. We had previously tried safety pins to keep his all in one singlets from being popped open but he pulls so much his singlets end up with holes, however I turned his wee pyjama suit around today so the zip is at the back, why hadn't I thought of this earlier?! He will be dressed like this 24/7 from now on. Harry is six weeks steroid free and other than the first week, the last couple of weeks seem to be the most challenging. Tiredness is kicking in for Andrew and I, as we can't see any visual signs that Harry is healing so it's groundhog day and night caring for him feeling like everything we are doing isn't helping his wee body. Andrew and I feel defeated. Perhaps Harry needs to be on immuno suppressants too. As I write this though my competitive nature kicks in - Let's wait another week, maybe we will see some signs of healing soon! Actually Harry did have a brief moment last week where he woke up with white legs and a white stomach.  It only lasted a couple of hours before he was flaring again- he has been in a constant flare since then! I really should stop being so negative and take that as a wee win! I am thankful also that Harry's face seems to be better than the rest of his body. His wee legs are definitely the worst.

Oscar has quite a bit of eczema on his body at the moment. As of next week we will be strictly living off meat, fruit and vegetables and rice for a couple of weeks. Some foods have sneaked back into our diet that need to go again. We do eat healthy but the odd lollipop, ice block etc will be eliminated along with soy again for Oscar. We have slowly reintroduced soy but I'm not convinced he's fine with it. I will need to do a meal plan of some kind to get my head around it and be organised with food for everyone's needs! The doctor has said we can try Oscar on 3 mg of diazepam as 2 didn't help at all. We have tried this only once and it still didn't help him to sleep! 

Last weekend Andrew and I got some well needed downtime. My family came up for the weekend and Andrew and I spent Saturday night away in Queenstown. It was so lovely spending time together. I forgot how easy it is to get in and out of the car without children! We both managed to have a good sleep from 10.30-7. This equates to roughly three nights worth of sleep for us. It was so strange waking up next to Andrew. I can't even remember the last time we slept in the same bed all night long-well over a year ago! In a way it was reassuring to hear the boys (other than Charlie) itched most of the night too. It's not just in our heads! Our wee break away will keep us going until the school holidays in a few weeks time. Andrew and I will be able to give each other a break throughout the day to snooze and having both of us here to care for the boys will lighten the work load for me, especially caring for Harry's needs.

I enquired about respite care yesterday. Eczema is classed as a personal health issue not a physical one so of course we don't qualify for this. It was suggested our doctor refer us to a social worker at the hospital who may be able to sort out some respite care for us based on a child having a chronic health condition however the condition needs to be very high needs. Guessing we won't qualify for this either and by the time we actually get an appointment it will probably be half way through next year! Why is severe eczema not seen as a serious debilitating condition? The impact on our family has been huge. Loss of income, our mental state, in fact I'm not sure how Andrew and I have managed all these years on the sleep we get. I'm pretty sure many families would have crumbled by now.  We will keep going, we will keep living in a 24 hour period until we get through this. I yearn for a 'normal' life again. I won't give up on the prize-  Having three happy healthy itch free boys... And sleep for Andrew and I again!

On fire!

Itchy..

More itching

Clothes on backwards!

Ouchy legs

A FACADE

How many times a week do I tell lies I wonder?

When people ask " Hi Cherie, how are you?" Of course I politely reply "Good thanks".

Obviously people would think I'm socially inept If I was to really say how I'm feeling! 

I got asked this question this morning and put on my brave face... A few minutes later I got in the car to come home from school/kindy drop off and burst into tears! 

Today I'm feeling angry. It started with Harry screaming and crying when I put his creams on. He then wanted to be cuddled up with blankets being comforted by me. I just couldn't this morning, we were already running late, lunches needed to be made, boys needed to be dressed, breakfast to be made. I didn't have time for him and this upset me. On the way to school Harry screamed all the way there. I turned the radio up loud to drown out the noise, however his cry is so high pitched it didn't work. Poor Oscar and Charlie sitting next to him not being able to do anything while their wee ears are getting damaged by the noise level! 

I'm angry and upset for so many reasons. I feel like Oscar's childhood has been robbed and that he is only just getting it back after so many years of suffering.  I'm angry that not one specialist has believed us when we have said Oscar doesn't have 'normal' eczema. He was more like a burns victim! I'm sad that many more children..and adults will have to go through the pain of TSW. I'm infuriated with the pharmaceutical companies- they are the only ones winning! Their profit margins from topical steroids must be huge!! I'm sick of copious amounts of washing every day. At least three or four loads daily of sheets, towels and clothes. I get upset every single time I have to pin Harry to the ground and shove syringes full of supplements into his mouth while he screams and wriggles. 

I miss having a low stress, fun family life. Having two children with TSW is consuming. Our whole life 24/7 revolves around their care. I hope I don't sound like I'm being selfish but I barely have energy to drag myself out for a walk. It would be nice to have the energy for a little bit of me time.

I miss my husband terribly. We seem to be living seperate lives. We have slept in seperate beds all year and we are lucky if we get to sit down together for half an hour in the evenings! We are both so tired this week. We are living in a crazy haze of survival. I'm angry that our grocery bill is astronomical with special foods for the boys plus supplements and creams for them on top of that. 

Now imagine if I said all this to the next person who asks how I am! Haha. I know it's not socially acceptable to really tell people how you are feeling and that when people ask It really is a form of saying Hi.

 Today this is really how I am feeling. No sugar coating. I started this blog in the hope of perhaps helping someone else going through this one day. It needs to be real to bring awareness about TSW and how it can impact on people/families. We are in the midst of caring for two gorgeous wee boys suffering with Topical Steroid Withdrawal. Did I expect it to be easy? certainly not. Will it be worth it.. 100%YES!!

One thing I am so grateful for is finally knowing about TSW. We could have been going on like this for years with no explanation as to what as happening with our children other than being told they just have eczema.

I look forward to a future of happy little boys who don't itch and scratch all night long, a future of a happily functioning family. 

TEMPTATION

This has been the only time where I really have felt like chucking all this in and resorting back to steroids. Andrew and I are exhausted. We are living in a haze and our brains just aren't functioning properly! We forget things, I often find things in the fridge that should be in the cupboard and things in the cupboard that should be in the fridge! We have no energy and I'm very sensitive and emotional about everything...Actually Andrew is too! Harry's wee skin is an absolute mess, it was a mess anyways but on top of everything he has had a reaction to emulsifying cream that I used on him a couple of nights ago. He barely slept all night and in the morning I got him changed and his top was blood stained all over and his wee body was burning. I feel terrible that this has happened to him. Harry is tired, irritable and for those that know him, he has an ear piercing cry that literally hurts your ears! Andrew said last night he thinks he's going deaf! Harry is just feeling lousy and as we are feeling low in energy it's not a good combination.  As soon as he sees me getting ready to put his creams on and he jumps up and down crying saying "Ouchy". He doesn't even want to go in the bath anymore. He's also saying "Cold" a lot and wants to sit on the couch with a blanket. Consistent symptoms to Oscar!
It's quite timely that I have been in contact with a lady last week who is also going through topical steroid withdrawal. Her mother used steroid creams on her from the age of three and around the age of 19 through to 30 she was using stronger steroids. Her Mum, like us had no idea the damage topical steroids can do to our bodies. She commented that our boys are lucky we are helping them now at a young age and she wished her Mum had done the same for her when she was little. I have this in the back of my head, that we are getting it over and done with saving our children from more pain in years to come. I only wish Harry didn't have to suffer like this! Hopefully he will be feeling better in a couple of days when the reaction subsides.

Oscar's skin isn't the best right now either. It's upsetting to see his skin deteriorate with the itching that he does. The itch scratch cycle does so much damage. It seems nothing consistently helps him to sleep. We have tried another sedative and he was still awake all night long. He is still coughing after two and a half months. His immune system is obviously struggling to get rid of it.
Gosh this journey is one hell of a roller coaster ride that can change so quickly depending on how the boys are feeling at the time, the amount of sleep we have had and how strong we feel mentally.
Chocolate, coffee, beer and wine are always on hand to help us through the harder days!

Harry's bloodstained top

Reaction from emulsifying cream

A chunk of skin hacked by Harry scratching 

A bit blurry but Oscar's bottom and legs!

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