This blog was initially about our son Oscar who has been dealing with debilitating eczema most of his life. I have changed the title as I am now documenting what is happening with our youngest wee boy Harry who has followed in Oscar's itchy footsteps! . Two itchy boys in one family makes for a crazy life but we will continue to work hard to get our boys well again.
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!
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.
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!
