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!