James’ face has been so much improved, we are able to use protopic 0.1% at the weekends and pretty much moisturisers the rest of the time.  I could spend all day just looking at his handsome wee face.  I was speaking to his teaching assistant at the Christmas Fair and she was commenting on the photo I had sent with the eczema fact sheet I’d prepared for him starting.  They’ve not had to see that, I find it upsetting to look at the photos, even though that was how he used to be… the majority of the time.  His face used to be varying degrees of severity, usually severe but sometime worse and occasionally better.

I’m loving it now.  He is a very tactile little boy and loves it if you stroke the side of his face.  It is an amazing feeling when it is soft!

Over his body is not too bad.  The cold does not seem to have affected it too much.  Central heating has.  Last week, his eczema did take a turn for the worse, but it ended up being more of an asthma problem.  Now he is 5years, he is officially asthmatic!  He has patches but not too bad - nothing that a bit of Elocon won’t hopefully sort.

Such a relief.

I did find out from someone who used to be an MDA at his school that not all of them are that sensitive during the hot weather.  She was saying that she used to get him to sit by the window to eat his lunch.  He overheats and scratches intensely.  Others however, apparently said, he needs to deal with it.  Oh if they could change shoes for a day and endure it.  I will raise it at the next parents evening pre-summer.

He always has a shower at the pool to wash off all the chlorine and other gubbins from the pool water.  A long time ago I noticed that he was not scratching much at all after swimming.  At that point I stopped putting anything in his bath water.  If it didn’t make his skin better, it certainly didn’t make it worse.  He is now back using dermol as a wash, but not filling the bath with any other emollient.

This morning James decided he didn’t want any epaderm ointment on his face.  I put some on my face encouraging him to put it on too.  When I had a shower a bit later, it was noticeable where I had put it on.  The water seemed to be sliding off.  I wasn’t convinced how clean I would be if I was covered in it.  Usually James just goes swimming (many pools don’t like creams on before the kids go in), then showers and then creams.  However, next time I will be trying the epaderm on the worst patches before he goes in.  Obviously I know how slippery it would make him and need to make sure his hands and knees can still grip so he’s able to pull himself out or I could grab hold of him if needs be.

He was only on a short 5 day course of 20mg prednisolone.  It does help his eczema initially.  Previously on a longer course (for his eczema) he tapered down the dose from 30mg to 5mg.  As he was going to smaller amounts his eczema started deteriorating.  This time it was great as he came off the tablets but last night I noticed how much worse it has become over his body.

So for James, it seems to be that whilst on a good dose of the tablets it helps.  Then when he takes a smaller dose, or comes off, his eczema returns with avengence.  It’s great that he had a few days with only minor patches, but now it can be deflating.

Last night I went out with some of the mums from his class.  Whilst talking about chicken pox, one was saying how awful it was seeing their little one’s perfect skin all bumpy and how awful it was to touch.  I remember crying when the health visitor said nonchalently that ‘Yes, it is a little touch of eczema’.  Thankfully for many it may just be a little patch, but having grown up with it I was upset!  Now I love the days when his skin, or part of it, does look clear.  The frequency probably isn’t far off how many times people get chicken pox!

However, on a positive note, James’ face is clear.  It’s not got really bad on his face for a few months now.  The steroids helped too - his facial skin looks amazing.

Having always been the one to put the kids to bed, I’ve suddenly been out 5 or 6 nights a week.  They’re unsettled and keep waking, as before they were good sleepers.  This week I will have tonight and 2 more nights in, including James’ birthday.  Being more tired from disturbed sleep and darker days too affects him.  He’s been going to bed before 6.30pm and is still tired.  Being tired, makes him itchier and therefore he scratches more.

I am so pleased James’ skin seems to be healing nicely on his feet after the hand foot and mouth.  He’s never suffered on his feet (I did) and I don’t want him to endure not being able to walk.  Whilst we were not using steroids it did get worse all over.  Afterwards his legs and arms were not improving so I thought I might just blast it with Elocon.  It’s always handy having it in the house!  It gave his skin a chance to get over the worst.

This week is his birthday and I am tempted to use the Elocon again so he is less itchy for his birthday.  However, next month he has a dermatology appointment and I don’t want it to be too great then.  That sounds awful, but if there is nothing to see, they can’t help.

I’m going to be working when the next appointment happens (as they have changed it).  This is good as my husband can go and hopefully be more assertive!  I even said to our GP that I was disappointed the last time we went to the dermatologist whereas before she’d been helpful.  I guess everyone must have off days.

Anyway, much better.  Keeping my fingers crossed that his feet heal without trace of eczema on them.  His hands were completely raw.  It looks so much better now.  I don’t worry about him breaking the skin open by holding things now.  Good timing over half term.  I know others in the class got it.  Sorry to them.

His face is great.  We have got back on to protopic 0.1% again.  We’re back onto the steroid creams too.  It is not shifting it though.  I guess it is preventing it from getting worse.  I wonder if it is better to blast it with a stronger cream and have a few days off, then repeat as and when, or use a milder one constantly?

Thankfully he is looking forward to returning to school tomorrow.  I don’t think he knows what to say when people ask him about his skin.  A wee friend asked him at school before half term, he froze to the spot and I explained it was just where he was itchy.  Wee boy pottered off again quite happily.  James’ confidence is coming on so well, I could really do without it being knocked!

Is his skin good or not at the moment?  Hard to say, not bad but not great.  Keep on with the creams and wait for the weather to change so we have the heating on to test his resilience.