WALKING ON EGG SHELLS

Oscar is so much better thankfully. What a brutal few days for him. He's had it all over the last week, power chucking, going at both ends and not being able to keep it in while trying to get to the toilet! Fair to say lots of washing and cleaning too!
Oscar finally had some massive sleeps over the weekend and his skin is healing again. I've noticed that his skin gets worse a week before the v&d then starts to heal only for it to happen again.  Will be interesting to see if we can see a clearer pattern of this if it continues. We saw the paediatrician last Thursday and It was pretty much what I expected so I wasn't disappointed. He believes Oscar initially had a gastro bug and now because of that his stomach is extra sensitive and something is irritating it. No kidding! Possible causes are food, Oscar's immunos or something else. So clearly he has no idea at all. He's not worried about Oscar's lack of weight gain, and thinks we should take Oscar off the immunos incase it's causing the stomach problems. I'm not sure how he can make this statement without actually talking to our specialist first. So basically he thinks Oscar will just get better by himself and crosses his fingers as he tells me this. We are getting an ultrasound done too at some stage then a follow up appointment. We also left with a prescription for a stomach anti-inflammatory so when I can predict Oscar's going to get sick I can give it to him to help reduce the severity of the V&D. These have to be taken prior to it starting so they're a fat waste of no good. Thankfully we have a repeat prescription!
So now we watch and wait. It's a horrible feeling waiting for your child to be sick!
So all of this was relayed back to Lisa and she has another opinion. She believes Oscar may have a worm or parasite infestation or an imbalance in his gut due to too many antibiotics. All of that completely makes sense to me. Oscar is still eating when he's sick. He can't eat enough! I never thought he had a stomach bug right from the start for this reason and also the pattern of vomiting every second night. So we will now start the first step of treating this with Lisa and see if this helps! I need to do more reading on it all myself before I can completely explain it all.
Harry Is still itching his wee feet and under his chin and neck. He keeps opening the patch under his chin so it's an open wound. He then wants us to pat it, Yuck! He seems to be itchy until 9.30 in the morning then lunch time when he's tired and again at bed time. Then the night shift of itch begins.
If he didn't itch he would heal but the itch is too overbearing for him.
Today when I dropped Charlie at Kindy we were doing a puzzle together. I could see Harry through the window sitting on a digger in the sandpit. A wee girl from kindy kept bending down and was looking under his chin. I was wondering what in earth she was doing until I saw her pull Harry's sleeves up to look at his arms then back to his chin and neck then she tried to look at his back but Harry had a bodysuit on so she didn't get quite that far. Then she pulled her sleeves up and her top to investigate her stomach. I'm hoping she was feeling reassured to see her skin didn't look like Harry's!
Well Andrew survived camp last week and we got through a rough week here. Thank you so much to my Mum for coming to stay for the week to help us. Thanks for your company, yummy meals, cleaning out Oscar's sick bowl in the middle of the night, and for your love xx

QUICK UPDATE

This is going to be short and sweet until I can add more. Another rough week with Oscar. Itchy, no sleeping and back to Vomiting and diarrhea! We have a paeds appointment tomorrow so I'm hoping he will refer us to the gastro paeds. Poor wee Oscar. He's put up with so much over the last few months.
Harry's Skin is still healing but he's adamant on ripping under his chin and his feet to bits still.
Charlie's healthy and happy. Well as happy as he can be fighting for our time and attention .
Andrew's on school camp this week and thankfully my Mum has come to help. Thank goodness! There is absolutely no way I could have survived the week. It is so lovely having adult company during the day.
Well Oscar's finally asleep so I need to sleep too. Will update after our appointment tomorrow.

NOT MUCH SLEEP THIS WEEK

I don't know what to write today. I feel like it's all just the same shit different day! I know we've had some good days and nights lately compared with how things have been and these moments give me the strength to keep going but honestly how much more of this itch do my wee men have to endure? One step forward and three back.  I want to fix our boys and we are trying...we've been trying for six years! Both Oscar and Harry have been terribly unsettled at night this week so seeing Oscar get over the finish line at his school cross country was a proud Mum moment, he came a very happy last!
The inflammation on Harry's skin is nearly gone with the increase of Methotrexate, however Harry's still very itchy and uncomfortable. I'm hoping this will subside over the next few weeks. He's still having brief moments of play but spending a good part of the day sitting on the floor wanting to itch or on the couch wanting pats.

I'm getting my head around refining the boys diet even more and following the Eczema Diet books recipes. This will be my third time reading the book! We are mostly there with all the suggestions in the book but it's really about being committed and organised with meal planning.  Stage one requires not eating apples, Oscar's favourite fruit. I've told Oscar that I will follow the diet too so that he's not alone. Harry will be served the same foods too however he's only two..nearly three and has a mind of his own!
I  woke up to a beautiful conversation at 6.30 a.m between Charlie and Harry yesterday..
Harry: "My feet aren't ouchy anymore and my arms have none blood now
Charlie: Does your skin feel better now Harry?
Harry: Yes
Charlie: If you don't scratch your skin then you won't get eczema like my skin"
I heard Charlie remind Harry later In the day not to scratch so he will have skin like him. What a lovely big brother :)

Cross Country Day..so proud of this wee guy 

THREE HAPPY BOYS

Good news and good news! The specialist gave us the go ahead to increase Harry's methotrexate dose and within a week it has done wonders. This time last week he was so uncomfortable, weeping and raw and this week his skin looks amazing. The problem areas have more healing to do but overall we're excited to see him looking so well and watching him happily play. Hes still having intense itchy moments but he's doing very well.
 I'm looking forward to seeing what the next few weeks brings for him.

Oscar came off his antibiotics last Friday and hasn't been sick or had diarrhea. He's been constipated and had Wednesday off school but other than that he's sleeping unbelievably well, waking in the mornings between  7.30-8.30 and has energy. After three months of being sick he seems to be completely well. As our doctor said sometimes they don't have the answers to everything and can't always explain why. So no need to be refered to the gastroenterologist paediatrician but we are being refered to a paediatrician. Oscar's Skin has started to get slightly itchier by the day after coming off the antibiotics. This isn't unusual for him so hopefully his skin settles soon.
I have started running this week and have managed getting out three times. I haven't done anything for myself in such a long time. I've had no energy or desire to. The emotional toll having two children with high needs is mentally exhausting but I now feel I'm at a point where I have to do something for myself. I have to clear my head every few days!
Andrew did the Peak to Peak multi sport race in Queenstown on Saturday and we went over to watch him finish. I don't know how he does it! It's very cool for the boys to see Andrew giving it his all and not giving up.  The boys are very lucky to have such an amazing role model.
Fingers crossed we have another good week.

Harry's feet last week 

Harry's feet this week 

ONE MAN STANDING

What a horrible week we have had. The boys and I have been sick with a nasty flu virus. I've been unwell for five days and the boys are beginning to feel better finally after seven days. Andrew took a day and a half off to look after us throughout the week. I obviously couldn't sleep during the  day as I had the boys to care for so this weekend I've been sleeping off the last of it. In fact I slept five hours today!
As I said in my previous post, Harry's skin has taken a hit this week. He's rubbed parts of his feet and legs raw and under his chin is weeping. The itch is still so dam frustrating for him and he's back to saying "I wan't to take my skin off." Hopefully in a few days it will settle again and his body can continue on with healing. Charlie's feeling much better and starting to eat again - unbelievably last week's groceries have been barely touched!
Oscar hasn't had the same symptoms as Charlie and Harry this week. He's been unwell with sore stomachs, temperatures and has been totally wiped out. This sounds terrible but I have absolutely no idea if he's had a bug or if it's all related to his stomach issues. One more week of antibiotics then we'll know more once he's off them. Today there was no mention of a sore stomach so fingers crossed we have a happy morning getting to school. Last Monday poor Oscar complained all morning that he wasn't feeling well but I sent him to school as I hear this every morning. Turned out he really was feeling miserable and didn't tell his teacher.  She noticed at the end of the day so Oscar spent the whole day feeling unwell at school. I felt so bad when he got home! Very similar to the boy who cried wolf. I'm not saying Oscar's lying every morning about feeling unwell with his stomach but it certainly makes it hard to figure out if he really is sick or not.

I must finish with a big thank you to some very special people who helped us to get through the week. Michelle, Nic and Kristen - Thank you so much for the yummy soup, meals and treats. I feel very blessed to have you as friends and to a wonderful charity here in Wanaka called 'Food for Love'.  Thank you for providing a beautiful meal for us. I look forward to giving back at some stage in the future. Thank you to my lovely Mum for ordering some meals to be delivered to us. So kind and thoughtful!  Lastly thank you Andrew for looking after us even when yon had such a crazy busy week with school reports due! Let's hope your not the next to go down!

GOOD RESULTS AND VIRUSES

Good news on the Oscar front. His latest stool samples were negative to inflammation. This is a huge relief. We now have to see what happens when he comes off the antibiotics as to whether we get refered to the standard paeds or gastroenterologist. Oscar has only complained of a couple of brief sore stomachs this week, so a good week for him!
 We have decided to now cut chicken out of Oscar's diet. He has often complained of itchy lips and a sore throat after eating chicken drumsticks or roast chicken. Breast seemed fine up until this week so time to listen to his symptoms. Chicken could very well be adding to his itchy skin.
We had another dermatologist appointment for the boys this week. Nothing new to report there. Just the standard brief of being told steroid creams need to be applied to the boys. We were initially told Oscar would be on the immunos for one year but it sounds more like 18-24 months now. We also spent a few days in Dunedin catching up with family and friends. We stayed at my Mums and the boys were pretty good sleep wise. This was our first trip away with the boys and a pretty successful one. I even had three nights off cooking...thanks Mum!
The school holidays have ended with Charlie having high temperatures over the last few days and now it's Harry's turn. He's just crashed out on the couch. Harry's feet and arms where he's still healing have completely flared up. His arms look like he has burns on them. I guess because he has such a high temperature. Poor wee guy.
I'm assuming Oscar will be next!
Back to school tomorrow. Fingers crossed for a much healthier term than last.

DESTRESSING...AND MORE ILLNESS

We have had another round of sickness with Oscar this week. Sore tummys still and diarrhea with one bout of vomiting. Yet another trip to the doctors. Feels like our second home these days! They are working with the paediatrician that we saw in  hospital to hopefully work out what's going on. More poo samples and antibiotics to completely rule out infection. The paediatrician doesn't think there is an infection though and is predicting Oscar will be sick again after coming off the antibiotics like last time. I don't see the point but can appreciate they need to fair test to see if we have the same outcome as last time. If this is the case and Oscar's poo sample shows inflammation like the last one then he will need to have a colonoscopy for further investigation. They are also concerned as Oscar hasn't gained any weight over the last year. A worrying time however I'm glad we are being taken seriously. Fingers crossed we will know more soon. Oscar hasn't complained of a sore tummy for the last few days and is happy enough although still very itchy.

Harry is looking better by the week and his feet are looking so good. He's still ripping his arms but the overall damage each time is less. He's had his fifth dose of Methotrexate now and I'm suprised how quickly he's healing. Harry did have a big flare up at the start of the week so his skin is still recovering from that but he's managed two nights of sleeping right through. Both these nights I was on Harry duty! Usually Andrew seems to luck the good nights. It feels very strange waking up with no wee child cuddled into you...or taking up most of the bed!
Andrew and I left the boys for the first time ever over the weekend  with someone other than family. A lovely high school girl from Andrew's work.  The boys can't wait for her to come back! A few hours off destressing was just lovely and it was great to spend time with Andrew. We would never have contemplated leaving Harry a few weeks ago as he was too itchy! I'm looking forward to having more down time soon hopefully!

DID I JINX US?

A couple of posts back I wrote that our days of Oscar being awake all night long are hopefully behind us. Well we have had many nights of Oscar being awake all night long this week! I can't completely pin point what's caused him to be so itchy but I'm  wondering if mandarins might be the cause? Oscar's been waking up this week between 9.30-10.30 so school drop offs have been late, however he's managed to attend every day this week which is a huge milestone in itself. Last night Oscar woke after an hour and a half and took a long time to settle.  He was tossing and turning, punching the bed with his wee fists while having fits of screaming with frustration.  All I could do was to try and reassure him.. .and pat him of course. I wish I could take away all of his itches. He finally fell asleep after a couple of hours. I know from many restless nights to not move an inch after Oscar falls asleep as the slightest of movements stir him and we are then in for another round of itching until he crashes with exhaustion. School holidays now for the next two weeks so hopefully we can get Oscar feeling better before school starts back. On a positive note, Oscar's test results came back and he doesn't have coeliac disease!
Harry's Skin is still healing well although he's ripped his arms to bits...again! He's told lots of people this week that his feet are feeling better now. They are looking better but he's still so itchy. It will be interesting to see how much healing he does In the next month as the medication build up. The overall red burn has gone and Harry's face now looks like a wee ghost -like we used to call Oscar after he started the methotrexate.
 The medication is knocking him about a bit in terms of tiredness. He's ready for a snooze by eleven and sleeps between two to three hours. Unfortunately this is a knock on effect come bed time and Harry's not quite ready to sleep at the usual time! He didn't have a day sleep yesterday and crashed on the couch at 5p.m and was then awake until we went to bed!
As his body adjusts he won't feel so tired.
Thankfully taking the medication hasn't been an issue as the pills are so small they can be easily squashed into a piece of food and Harry is none the wiser.

Looking forward to hopefully having a sleep in tomorrow morning and going on some fun adventures with our wee men.

THE BLOODY ITCH

Harry's Skin is looking so much better and the itch is definitely dissipating but Harry's wee feet are still bothering him. No wonder I'm cleaning blood daily from our carpet with the rubbing he does on the floor. This wee video speaks for itself!

I CAN SEE CLEARLY NOW....

That we are getting some decent sleep! Both Harry and Oscar are doing well. Oscar has had a few nights of sleeping right through but is mostly waking a couple of times a night and only briefly. Gone are the days of him being awake all night long itching like crazy and me patting like crazy, being too scared to move as the slightest of movement would wake him only to itch for another hour or two! Harry is sleeping longer and unbelievably slept right through until 7.30 a.m the other night- this was a first for him! I'm waking up now not feeling like I'm stuck in a haze and it dawned on me the other day while I was driving to school how clear it was out the window..because my eyes were in focus and I wasn't driving completely exhausted. Looking back on things there were certainly many mornings that I should probably not have been behind the wheel with my precious wee people in the car. However I'm positive those days might be behind us now. I am struggling to fall asleep at night as I'm just not used to the boys sleeping. I'm waiting for the sounds of hacking and crying. This has been our life for six years so I imagine it will take a bit for our bodies to adapt to such a change. Andrew is waking in the early hours of the morning and can't fall back asleep. He's used to only a few hours of broken sleep a night so his body is probably waking after four or five hours of quality sleep ready to start the day!
Oscar and Harry had their blood tests this week. I thought it would be easier to get them done together when I booked them in..anyone with three boys, or three children will understand how hard such a task can be but as we didn't have to wait long the boys were great! Phew. We got through the blood tests relatively unscathed. The nurses were relieved they drew blood first time round- we have had a few incidents of this not happening and Oscar understandably gets upset. Last round they had two attempts on Harry and I think it hurt me more than him having to watch him! Tonight at the dinner table Charlie told me he felt like crying watching Oscar and Harry have their blood tests. I didn't even think for a second how he might feel watching them! I'm so glad he was able to tell me how he was feeling. From here on in I will book the boys blood tests on a day that Charlie is at Kindy!
Harry's wee body has got worse as today has gone on. His entire back is red and splotchy and he's terribly uncomfortable. Last night Andrew heard Harry scratching and went to check on him to realise the noise he actually heard was Harry grinding his teeth in his sleep while rubbing his feet together. Poor wee man. It takes six-eight weeks for the methotrexate to build up and work properly. I can't wait to see my baby itchy free.
Oscar has been slightly itchier the last couple of days and I can't put it down to anything. ..but on a very positive note,  finally after nine weeks there are no more stomach complaints. Thank goodness! Oscar's  doing very well at getting to school too. He's only had one day off over the last two weeks and I'm hoping he will get to the end of this week. Oscar's happy to say goodbye when I drop him off. It makes such a big difference walking away knowing he's not crying. This has to be by far the quickest term we have had with Oscar missing so much school. I really hope next term doesn't bring any nasty winter bugs. One week until we get to have a couple of weeks going on some fun family adventures.

So proud of this strong and brave wee guy. 

Harry got this water trough for Christmas. This is the first time he's been able to play with it!

Recovering from an itchy episode 

A day trip to Queenstown 

A fun outing to the Toy and Transport Museum 

MINI OSCAR

We finally got Harry's allergy test results back this week. The specialist requested the children's food mix and on paper Harry's allergic to milk, fish, soybean, peanuts, wheat and eggs...Harry loves eggs! However allergy testing isn't reliable while going through TSW as your body is hypersensitive to everything . I believe If Harry was tested for environmental allergies these would have come up positive too. It seems Harry really is copying in his big brothers footsteps. Harry's Skin sadly has got worse this week..maybe it's because of the eggs he's had for lunch!! Last week I honestly thought we were over the worst of things. Harry was doing so well although he was still very itchy. This week has been a week of blood on the carpet multiple times a day. Harry's wee body has weeping, blood all over him. He has been distraught crying and saying his skin is ouchy and he wants to take it off... and he smells again! This was enough for me to except the fact that Harry needs to go on Immunosuppressants. I guess I was quite naive to think we were out of the woods. However I know how far Harry has come on this journey and hopefully he won't need to be on the drugs for too long. Enough to settle things down and give him a reprieve So that his wee body can heal enough to get this dam itch gone for good.
Harry had his folic acid a few days ago (this apparently helps to counteract some of the side effects) and lastnight he had his first dose of Methotrexate. Here we go again! At least we know what we are in for this time. Here's hoping this is another step towards this journey being over.

A NEW AND IMPROVED HARRY

The boys and I have been down and out over the long weekend with temperatures and a nasty cold and to top it off Oscar has impetigo on his face. This is something we have not had to deal with before and it's amazing to see it multiply before your very eyes! Thankfully it's clearing up nicely. Oscar was at the doctor for this yesterday and again today for a follow up on where to next for his stomach. His stool sample has come back showing a high level of inflammation. This really doesn't tell us much more so isn't a great help! If anything  it proves there is something wrong with him. The paediatrician suggested the next step is worming him and another dose of antibiotics for two weeks. Thankfully the doctor agreed with me and believes that antibiotics are not the solution. So monitoring at this stage and coeliac test in a few weeks with Oscar's next bloods. This was supposed to have been done already but for whatever reason was missed at the lab. For an accurate test there needs to be a little bit of gluten in your system for a few weeks so at least this way we will know for sure. Oscar's happy enough but still complaining of a sore stomach 3-4 times a day and comparing him to what he was like when on the last round of antibiotics there is a vast difference. This was the only time we saw Oscar up early to start the day!

On a great note, Harry is looking amazing! His antibiotics finished nine days ago and he still looks good. He seems to have 'normal eczema' so will see what the next few weeks bring. His skin also feels so soft. I can't help but touch his legs. Tonight before bed Harry pulled up his sleeves and proudly showed Charlie his arm and said "Feel my arm Charlie!". The last two nights we haven't wrapped Harry's hands and I'm very excited to say Harry has had two nights in a row of sleep. One night alone of sleep previously would have equated to three nights sleep!  The first thing Harry said when he woke up this morning was that he had a good sleep in his bed. Fingers crossed this continues. I believe this a massive factor in Harry's Skin looking well, he's able to heal with the amount of sleep he's finally getting. Harry is also eating now with no sleeves. It's so strange seeing him without sleeves on. The biggest thing we are still getting used to is seeing Harry wear proper clothes. ..not all in one suits backwards! The hair that has been rubbed off behind Harry's ears and also his eyebrows is beginning to grow back too. Gosh, so many positives in such a short time frame. Harry really is a different child and I'm hoping I can safely say we are over the worst of topical steroid withdrawal. This means that Harry won't need to go on immunos either.  He's still dam itchy and has moments of needing redirected but he's no longer sitting on the floor screaming and crying all day trying to attack his skin. This means we can finally start toilet training, Harry will be able to start Kindergarten at some stage in the near future and it's one huge step to normality for us. Most importantly Harry is able to play and learn and enjoy a life of being comfortable again. The biggest damage is to his feet still but in time they will heal, as will Andrew and I. This has been one hell of a journey and our children have had to come first. Their health and their healing has been paramount. Andrew and I...and our marriage will be the next step in healing. Again this will take time but we will get to where we need to be.

MORE IMMUNOS- MORE POO!!

A crazy week for us of ups and downs. Firstly, Harry... Harry had a specialist appointment on Tuesday in Dunedin and we have made the decision to put him on immuno suppressants also. We have come to the point in this journey where we feel like we are no longer coping as a family. Actually we have felt like this for some time but we wanted so much to get Harry through this without drugs but I just can't watch Harry in pain any longer. He screams every day at us saying "Take my skin off" and "My skin hurts". I feel like we are torturing him! Enough is enough. We have hung on for eight long months and we have seen healing, very slow healing but not enough to continue this way.
Last weekend I turned our bedroom upside down trying to find steroid cream in desperation to ease Harry's pain.  I did find some and used it. I honestly thought I would never touch topical steriods ever again. I guess this proves how desperate we are! Unbelievably Harry slept all night, the first time in eight months...actually the first time ever! To me this proves how addicted his wee body is to topical steroids. He had the fix his wee body was craving. He is on antibiotics now before going on the immnos in a couple of weeks. After a day of being on them we have seen a huge improvement -  Harry is a changed wee boy..momentarily at least. He's sleeping, playing, laughing, he didn't wear socks the other day all afternoon and tonight he didn't have his sleeves on for a little while and there was no scratching! He has had a couple of itch sessions throughout the day that are short lived. Harry pulled up his sleeve tonight and said "My arms white". He's also said "I feel good now".
I do feel defeated and have moments of doubt in what we are doing, swapping one drug for another but I need to think of all of us in this decision. Ultimately I want my baby to be comfortable and happy again.

Oscar had his last lot of antibiotics last Sunday and on Wednesday he woke up with diarrhoea and vomiting again.  Thursday was much the same. The doctors are running more blood tests and stool samples. Far out, the amount of poo we have been dealing with the last few weeks! There's a couple of things the doctor and paediatrician from Dunedin are looking into so hopefully we will know more next week. Oscar is happy enough at this stage thankfully and his bowel motions seemed fine today but he has a sore stomach again tonight.  It will be interesting to see how he feels over the next couple of days. Fingers crossed his body is just trying to get back to normal after being on antibiotics.
A tiring week emotionally but thankfully with Harry sleeping better this week I feel like I have been able to cope with it all without feeling too frazzled!

Clear skin after a day of antibiotics 

A HUNGRY BOY

We are home again and Oscar's appetite has well and truly returned! It is so lovely to see him eating again, smiling and playing.
The doctor's seem to think Oscar had a bug of some kind attached to the lining of his bowel and as he's on the immune suppressants his wee body struggled to fight it. He's on anti biotics for 10 days and off the immunos for two weeks so hopefully this should do the trick. We came home to lots of beautiful cards from Oscar's class mates wishing him well. He was so chuffed reading them. Tonight Oscar said his tummy rumbled and told him he's not going to be sick tonight so the towels and sick bowls have now been put away finally.
Unbelievably Oscar's Skin looks amazing! He's barely eaten for the last couple of weeks so I'm presuming that's why.
Considering how sick he's been, Oscar looks remarkably healthy! Fingers crossed this continues.

Harry has a cold at the moment and looks terrible. His face is all red and splotchy and the rest of  his skin is a bit worse for wear. He's quite miserable so hopefully he be feeling much better in a couple of days. Oscar and Harry's health never seems to quite line up being healthy at the same time... surely one day they will.

A big thank you to our family and friends for their care and support this week. Thank you also to Oscar's classmates for their beautiful cards.  They put a big smile on his face.
Here's to a better week to come!

HOSPITAL!

I'm happy to report Oscar's Skin looks amazing!... For the fact he's barely eating. Today is day 15 of him not being well. Intermittent vomiting and diarrhea every second day. Food poisoning has been ruled out and we are waiting on the giardia test still and bloods were done today. Poor wee Oscar, gosh he puts up with a lot! He hasn't been back at school this term and I can't see him going back this week. I'm going to have a very big job on my hands trying to settle him back in to class. At one stage I had thought perhaps he's making himself sick so he doesn't have to go to school! I'm pretty sure that's not the case though. We just want to see him well again. The sooner he is off the immuno suppressants the better.

 Harry's got a slight cold at the moment and his skin has flared up.  He managed to scratch his arms to bits within seconds while in the bath yesterday and last week got to his legs while he was supposed to be snoozing! I walked into a terrible sight of blood all over the carpet, he managed to take all of his clothes and scratch sleeves off and his legs were raw and bleeding. I wanted to scream at him! He needed to have a bath so that I could wash the blood off and the poor wee man was in so much discomfort. Possibly one of the quickest baths he's had. Harry's still playing and is generally happy so at this stage I'm feeling ok with where we are at in terms of healing. Obviously I would like to be closer to the end of this journey than we are but I know how far Harry's come. It's just so frustrating seeing him damage his skin as it puts him a step back in healing. Taking the good with the bad..that sums up life really!

Update: The above was to be my next  post and I was going to add photos today but we are in hospital with Oscar in isolation as he's still sick. They are not sure what's wrong at this stage. Some of his blood test results were out of range so he's being monitored. Nine thirty in the evening we are waiting for stomach x-rays and we're cuddled up watching Grease on TV.  I feel relieved to be here as he's been sick for far too long! Will update when we know more.

A SENSE Of NORMALITY

It's the end of school holidays for us. It has been lovely not waiting on Oscar to wake up to then have to rush around getting organised to get out the door..even though we are usually an hour or so late! Oscar's wee body is lapping up the sleep ins and I can honestly say his sleeps over the last couple of weeks have been the best he's ever had! His body still has eczema on the previous areas and we are having trouble shifting this but he is mostly comfortable and happy. It will be interesting to see how he gets on back at school with the temptation of other children's food. I found pretzels in the bottom of Oscar's school bag when I was cleaning it out last week. He admitted that he found them on the field and he had eaten some of them.  We will give it a few weeks into the term and see what's happening before deciding if we need some outside help with this situation or not. Oscar is recovering from his second tummy bug within a few weeks. Hopefully no more for him! I am dreading winter bugs especially with Oscar on immune suppressants.  We have reduced Oscar's dose this week. This is our second attempt so fingers crossed he doesn't get too itchy. If he doesn't this is a huge step to becoming drug free. Fingers crossed!

Harry is doing well. His feet are slightly better but he can easily change that within seconds! We noticed some new stains on our carpet a few days ago and couldn't figure out what they were from as I was certain they hadn't been there the day before. On closer inspection it's blood! Harrys obviously rubbed his legs on the carpet and bled slightly. This probably happened while changing his nappy. It's not bright red so I'm assuming it's mostly ooze..Yuk.
Harry slept for five hours in a row last night. I think this is a world record for him.  He's still restless and itchy throughout the night but comparing a few months ago to now his sleep is certainly better.
Harry's new scratch me not sleeves only lasted a few weeks and now have holes in them. I guess they are not designed to withstand the constant rubbing and scratching from TSW.

The last two weeks have been our first school holidays being able to get out of the house spending time together as a family having fun and going on adventures. We even managed two trips to Queenstown without no itchy attacks. The boys also went on a big walk up to Rob Roy Glacier..two hours up and an hour and a half back down! Andrew had Harry in the backpack and Charlie on his shoulders some of the way and Oscar walked the whole way. We had a great time and unbelievably there were no meltdowns. I'm so excited for our future holidays with healthier children. I can't put into words how lovely it has been being able to manage time outside the house without itching, blood, screaming and discomfort for Oscar and Harry.
Both of them have come such a long way!

SLIGHTLY MORE SLEEP

The last week has been the best week we have had in terms of sleep in years! We tried the sedating antihistamines again and they seemed to have worked. Previously for both boys there had been no relief with the use of it. Another sure sign they are healing. Harry usually wakes every couple of hours then is particularly unsettled from around 10pm until 4 or 5am but he's has had a few nights of sleeping from 7 until midnight. This is huge for him. Andrew and I need to learn to go to bed at 7! Oscar has had another week of reasonable sleeps and massive sleep ins. Anywhere from 9 until lunch time! His body clearly needs it...although he does have a few years to make up! The downside is getting late to school as Oscar is unsettled and upset walking into class late. I found another bar in his bag yesterday. It hadn't been open but it makes me wonder what is being eaten at school that we are unaware of. I'm looking forward to school holidays next week as I know we will be completely in control of Oscar's food.
Oscar finished his first term of keyboard lessons this week. They had a little concert for parents showcasing what the children have learnt. I was so proud watching him.  He has learnt so much already and hopefully he will continue with this interest as sports are too hard at the moment. Oscar wouldn'tbe able to consistently turn up to practices and games and would end up sweating then he would suffer with itch! I'm hopeful next year he will be able to join a sports team.

We only realised a few weeks
ago that Harry has lost most of his eyebrows! He has very fear eyebrows anyways but it wasn't until we were looking through photos that I realised! He has also lost a lot of hair, in particular behind his ears where he rubs lots. I know it will grow back but have a feeling it will get worse before it gets better as he rubs so much on his head. He has had short day sleeps lately and I only figured out yesterday that he's not sleeping. He fell asleep in the car yesterday so I knew he hadn't slept in bed yet he was in there for 45 minutes. I checked him after ten minutes today and sure enough he was on the floor in his room scratching. He had managed to take most of his clothes off even with his sleeves on. Harry's overall appearance is amazing. The problem areas are his wee feet and wrists as these are easy places to access and rub, even with his sleeves on he can do so much damage.  It seems the oozing stage is over unless he rubs himself raw.  The flaking of skin is slowed down significantly too. I honestly feel we are over the worst of tsw with Harry. He's happy, energetic, independent and can be distracted from the itch from time to time. I wonder how long the itch will stay for?

School holidays next week so hopefully we can have some fun family days out and about exploring paradise around us.

LOOK HOW FAR WE'VE COME

It has been a crazy week with illness in our house so I'm sorry for  not updating earlier. We've had colds, chest infections and tummy bugs. Hoping that's our lot for awhile!
Harry has been doing well with his skin looking quite good. The biggest challenge is not letting him get to his skin so he can't tear it apart. He has some new Scratchme not sleeves (thanks Mum! ) and is finding it strange that he has hands free to feed himself.  He keeps asking me to help him so I have to remind him he can do it. Turn our back for a second though and he's straight into scratching so we have to watch him like a hawk. We are continuing to see more pink/white skin. Harry's still shedding skin but no where near the amount he was.

Oscar has missed a few days off school with a tummy bug prior to Easter then after Easter he was sleeping in until between 10.30-11.00! His body is trying to fight getting a cold I think as he looks run down.
On Friday afternoon a muesli bar wrapper fell out of his school bag onto the floor. I queried him on it and he burst out crying telling me that someone must have put it in his bag and he didn't want to talk about it. I left it for awhile and brought it up again later that evening. According to Oscar he found it in the playground and then ate it. He said it was ages ago but based on the night we had and the red spots all over his stomach the next morning I'm pretty confident it happened on Friday. The bar was full of dairy, soy and eggs.
A few weeks ago when I picked him up from school he was eating a bag of potato chips he claimed to have found so we have not long ago already discussed only eating food from his lunchbox. Then yesterday I went into our wardrobe and found another bar on the floor, different than the previous one with only a small bite out of it (clearly he didn't like it!). I asked Oscar again if he found it at school and he said yes and began to cry, begging me to not tell him off. If only he knew how sad I was feeling for him. Again he claims he found it in the playground.... how many more do we not know about?. I feel like my life revolves around preparing food for Oscar that he's not allergic to. It's dam hard work to provide variety when the choice of foods is limited. Oscar has also mentioned someone has told him his lunchbox is yucky. He is very unsettled at school drop off crying and tries to run back to the car! I'm wondering if this all related. Not sure how we are going to tackle this but thankful we now know whats happening. Today we are going to attempt to make our own muesli bar but will it be enough for Oscar to not give in to temptation at school?
Andrew has helped to make the following video clips of the boys. Heartbreaking for us to see all the photos put together. Harry's is harder to stomach however Oscar has been on this journey since the age of one! Putting Oscar on the immune suppressants was definitely the right decision for us to make. It scares me to think how sick he would have been otherwise. The immune suppressants have helped to give him his childhood back. We still feel Harry is far too young to be on them and he's made so much progress in the last six months. He's happy itchy now compared to miserable itchy!
I'm confident we are over the worst of this journey, I at least hope we are!

Oscar's Skin Condition  Clip 2010-2016

Harry's Skin Condition Video Clip Oct 2015 - April 2016

A HUGE MILESTONE

Oscar is officially 6 months steroid free and Harry is 5 months. What an achievement for our wee boys. We are very proud of how far they have come. Oscar is on night three of putting himself to sleep so once this is established he will hopefully be able to start the night off in his bed. Oscar's eczema bits have flared up again. He has eaten mandarins this week so I'm wondering if this is the cause- wild stab in the dark really! Oscar has been complaining of being tired this week (more than usual that is) and has been very unsettled at school drop off, crying and not wanting me to leave. It doesn't help that we are usually late every day as he doesn't wake until anywhere between 8-10am! I'm hoping it will blow over and he will be happy at drop off again. I know he's fine once I have left thankfully and I know that he does love school.

Harry is still happy enough but he's made a mess of his neck and behind his ears - to the point that he's rubbed so much he has lost some of his hair. This shows how intense the itch must be. I have also discovered today he has blisters on the tips of some of his fingers and thumbs from rubbing so much.  He's also had another go at one of his feet today. Harry is back to having a terrible stench about him. His room smells after his day sleep and at night, even Oscar and Charlie have commented that Harry smells! From time to time I feel nauseous when I get a wift of him! It's so hard to describe. It's like he radiates heat and when you walk into his bedroom it feels almost humid and I just can't figure out the words to describe the smell! He's not oozing at the moment but still has a distinct smell to his skin. I'm sure this will reduce as he continues to heal.

Overall he's come such a long way too and I can't wait to see what both Harry and Oscar's skin looks like in a few months time. I was hoping to do a slideshow of photos of the boys skin from six months ago to now but haven't had the time so will post this in a few days.

Lastly thank you for reading this blog. Today marks just over 5000 hits! It's quite humbling knowing people care enough to take the time to check in on us. Thank you for the lovely comments on here and via Facebook from family, friends and People we don't know. Kind words and encouragement help us to keep focused on the end prize, itchy free, steroid free, drug free... happy children!

ANOTHER WIN

Two weeks in of Oscar's new diet of fruit,Veges and meat and his skin is looking unbelievably better! When Oscar started on methotrexate his skin completely healed. The burning and swelling disappeared. A few weeks later the eczema appeared. This started in October and we haven't been able to shift it- around his neck, under arms, upper thigh/ groin area, bottom and behind the knees. Oscar's skin has healed so much in such a short time and he even said himself "I don't feel so itchy"
I suspected corn as the wheat free breads and flour for baking is maize based. Oscar's had a slight cold this week so this puts us a step back however I'm hoping the next couple of weeks bring even more healing for him. Oscar even slept on Saturday night for 14 hours! He woke a few times but very briefly. Quite possibly this could have been the best sleep Oscar's ever had!

Harry is still happy enough but he's attacked his feet and legs this week. Lots of broken bright red oozing smelly skin. Even after a bath he smells! Harry's wee face is very dry too but I have to keep reminding myself how far he's come. He's back wearing an all in one suit with his sleeves. We still bandage his hands at night too. If only we could do this 24/7! All Harry's clothes are stained  yellowish from the ooze or red from blood. I can't wait to buy him lots of fresh new clothes but there is just no point at the moment as anything I buy will get ruined after a few wears. One day he won't smell and will be able to wear nice clothes! He really looks like a wee mismatched wee guy with his suits, sleeves and gumboots!
Harry has had a couple of nights where he has slept four hours before waking. This is pretty monumental for us so hopefully we get more of these nights as usually it's four hours total sleep for a night. We won't know ourselves when our wee men start sleeping all night!

A very sore leg!

Oscar's neck is finally healing

HAPPY HARRY

I'm so excited to let you all know that we are finally seeing visual signs of Harry healing! I know there has been a lot of healing from within that we can't see but just over the last week we have seen significant changes in Harry's skin and his overall well being. Harry's talking, laughing, playing. He's no longer snuggled upto me all day long. It feels like he's become independent over night wanting to walk rather than be carried into Kindy and school and doesn't feel the need to carry his Kane(snuggly blanket) with him everywhere. I cannot express how relieved both Andrew and I feel- we have our wee guy back! Harry's legs no longer look burning red and his stomach is beginning to look that way too. His arms are the worst with lots of broken skin. As soon as the sleeves are off Harry literally attacks his arms and we have to restrain him to get the sleeves back on! His overall appearance is less severe and over the last few days Harry doesn't seem to be smelling like what we refer to as 'rotten flesh' as much. I whole heartedly believe stopping moisturiser has been the key in his turning point towards healing.  Strangely though Harry has gone back to not enjoying the bath. The last couple of days he only lasted a couple of minutes before wanting out and today he didn't want in the bath at all. He's gone from loving the bath to hating it to loving it and now back to not wanting to be in it! He still has awhile to go on this journey but we really are on the right road to healing and I no longer need to self doubt. I can let go of some of the guilt I hold- watching Harry completely miserable and in pain daily for close to five months has been torture for us all! Hopefully in the very near future the insomnia will start to subside too. I'm not expecting everything to change quickly. It will still take time but I believe Harrry has overcome the worst of his steroid withdrawal. I have tears in my eyes as I type this! It's such an emotional roller coaster. Mentally I have more strength than ever to see this through now.
Oscar is on day three of his meat, fruit and vege diet and is happily embracing it. He's having platters of food for breakfast rather than a traditional breakfast in a bowl. He informs me that his food looks fancy so I must be doing something right, especially as he has eaten everything out of his lunchbox this week too. Why does healthy eating have to be so dam expensive though? We did a similar diet last year in terms of gut healing in the hope of that helping Oscar. Obviously it wasn't our magic answer but we also had intolerance tests done so this time round we have a clearer picture of what we need to avoid. My fingers and toes are crossed that in a few weeks we might see some more healing with Oscar.. If not we will need to go through his food list and refine it further. We will get him eczema free. The photos below of the two pink balloons were made by Oscar this week. The happy balloon apparently has no eczema, the sad one has eczema. Very interesting seeing these emotions portrayed through play.
Oscar is nearly six months steroid free- what a milestone for him. Thinking about all those days- mornings and nights when we applied steroids all over his entire body plus emollients and concoctions of all kinds. We had no idea the damage we were causing and what we were in for! I'm so thankful that the  boys are both healing and I can now for the first time in many months visualise a fun and happy future for our family. I'm so excited about this prospect!

A balloon with eczema

A balloon without eczema! 

Lots of broken skin on Harry's arm

Check out those legs.. Not much red!

                                                           What legs should look like!

Oscar finishes his school duathlon after a night of not much sleep

Charlie had his first Kindy triathlon too!'

MIDDLE OF THE NIGHT MELTDOWNS

Oscar is five months TSW and the problem areas on his skin have been at a bit of a standstill. Or it appears to look like it's going to heal only to go back to being itchy and ouchy again. This could possibly be 'Just eczema' so we will need to figure out what is irritating him. I'm suspecting food of some kind so we will be working hard to figure out what! Oscar's had a few random good nights sleep over the last couple of weeks . He is still waking lots but nowhere near like he was six months ago. Oscar started keyboard lessons too this week- a huge achievement for him as last year this was something we would have never considered. Hopefully next year he might be able to participate in a sport. His class are going for swimming lessons starting next week for three days then two days the following week. Sadly Oscar can't go swimming in chlorine, the mere thought of this freaks me out! It saddens me that he doesn't know how to swim and that he's probably the only one in his class unable to go to lessons. However his health is our priority so he will be having home days with me. We have decided to have our own swimming class at the lake!

Harry's skin is much the same, although yesterday he woke with a white face and legs that stayed white for at least half of the day. He was in such a happy mood and not one comment about being cold! Today he's back to being red but I will take one happy day and use that to focus on the thought of more of these in the future. Harry's a couple of weeks moisturiser free and seems to be coping with that fine. The sound of opening the pantry door to get creams would set him off into a screaming fit. I need to follow his lead and listen to him and obviously I don't want to listen to his scream any more than necessary!
Harry's still happy to be in the bath- purely because he can itch! His latest saying is "Take my skin off". He wants to pull the flaky skin off but sometimes it's not ready to come off. Nights are still hell. Around 4-5 p.m every day I get a sinking feeling in my tummy knowing what we are in for and that our day is only half over- the night shift is about to start! Harry and I had a particularly rough night last Monday. I had forgotten to wrap his wee hands and even though he wears scratch sleeves he still itches! I tried to bandage his hands and he completely lost it. He must have had a surge of adrenaline as I couldn't even hold him down so Andrew had to come and help. It took the both of us to bandage him and then I cuddled Harry into me while we both cried. Gosh it's heartbreaking seeing him like this. We then got up for a midnight snack before attempting to try and sleep. Harry is so grumpy and irritable in the mornings! It's a struggle to put his nappy on and dress him. In fact we dropped Oscar off to school the other morning with Harry not wearing pants! After a morning sleep he comes right thankfully, although he still wants to be sitting on the couch cuddled up with me. I love being snuggled up with him but I can't wait until he is tearing around exploring his wee world like a two year old should be.
We have had a big weekend with Andrew completing in the Challenge Wanaka.. 3.8k swim, 180k bike ride and a marathon to finish it off! He had a great race day, although I'm not sure how on such limited sleep. I was able to take Oscar in to support Andrew towards the end of the run and Oscar proudly ran over the finish line with his Dad!
Oscar then got in the car and stripped his pants off and we drove home with him half naked as his legs were itchy! Thankfully we didn't get pulled over by the police!
Special thanks to Kristen for offering to come out and look after the boys so we could see Andrew finish.
Lastly I'm so happy that my blog has been found by someone this week in NZ needing help and support with TSW for their child. This was the initial purpose of sharing our story in the hope of helping someone else and I have achieved this already.

Oscar's legs 

Harry's legs 

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!!