06/02/2012 by spindlygiraffe.

It has been a long time since I posted on here.  Overall things have been pretty good.  My huband took James to his last dermatology appointment and asked questions.  The referral to a paediatric dermatologist had been rejected.  In fairness it has not been so bad since then.  However, I was cross it was rejected.

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.

Posted in Children and Eczema, Eczema and the Weather | 1 Comment »

02/12/2011 by spindlygiraffe.

Last week, coinciding with James’ birthday he was on prednisolone.  I got the call from school that he was very wheezy and went to get him.  I’m not sure if he is ‘officially asthmatic’ but he has been admitted to hospital, had several courses of prednisolone and several bouts of using ventolin regularly.  He’s not yet on a preventative.  His breathing never seems to get bad when his eczema is severe.

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.

Posted in Children and Eczema | 1 Comment »

20/11/2011 by spindlygiraffe.

It has been a while since I posted here.  In a whirlwind I’ve got a little evening job, finished a short course I was doing and the assignments as well as trying to keep up with life and the ironing.

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.

Posted in Children and Eczema, General | 1 Comment »

19/10/2011 by spindlygiraffe.

I read the end of my last post.  James had just gone to bed shivering and then been really hot.  In the morning he was fine and trotted off to school.  He came out saying he felt much better than the day before too.

Arrived home and he took his socks and shoes off straight away and sat scratching at his feet.  He doesn’t have eczema on the soles of his feet - yet.  It looked bumpy and red, but not a problem.

On Monday I had asked the chemist if I should put anything on my daughter’s hand as it looked much worse than when she saw the doctor.  He said just a barrier cream.  On Tuesday it had spread further, more infected.   My Mum had recommended something, so I went to a different chemist.  They saw her hands and recommended not using the suggested stuff. By night she had a bit on her feet too.

Last night both children ended up with a dose of calpol.  James was up with incredibly itchy feet.  This morning, his eczema was much worse (despite trying to blast it last night with elocon) - raised, inflamed and infected.  His feet had red spots and his hands were blistered.  There was also a rash on his face not like his usual eczema.  Great, school photo day!

I was going to take the kids early to school for their photo.  Instead I booked a double GP appointment.  Confirmed both.  Daughter got more fucidin.  I did not know what to put on James’ skin.  Lucky I asked as she said not to use the steroid creams as they would basically feed the viral infection.

School - can he go or can’t he?  Doctor said no, but read the official guidance and said there was no reason to keep him off.  School were more hesitant.  I took them round for the photo when the other kids were not there.  The Head’s own children had had it and she was fine about him coming back tomorrow.  The secretary less sure.

The problem is, it is contagious.  So obviously it would make sense to keep him off, however, he could be contagious for several weeks.  Selfishly I want to see his class assembly on Friday afternoon.  I can already feel the burning eyes of other parents as they know ‘it is him’.  The damage is done already though, he has probably been contagious for a while.  The doctor has seen quite a lot of people with it lately.

He feels ok in himself, but is tetchy and more emotional.   I am hoping it does not turn into eczema on his feet but disappears as quickly as it came.  I developed eczema on my foot after cutting it on a rusty nail.  It took 12 years to get rid of it on my foot. Hope my daughter is ok too, it started in a little patch of her eczema.

Posted in Children and Eczema, General | 2 Comments »