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 »

14/08/2011 by spindlygiraffe.

Yay James has a dermatology appointment tomorrow. I have my list of questions that I must write down for her.  His skin has been infected again.  He really gets some nasty looking mounds that are infected.  All over he is incredibly itchy.  He keeps saying ‘I want to stop scratching but I can’t.’  Heartbreaking.

I guess the weather is hot at the moment.  He has been complaining about being too hot.

Cold things from the fridge help momentarily - but I don’t want to be putting the frozen peas on him.  He wants the peas but his body temperature is all over the place and he would have the cold things sticking to his skin and peeling it off without complaining they were cold.  Wrapping them in a tea towel diminishes the coolness too much for his liking.  Jam jars work the best.

His head is insanely itchy, but then his arms legs and trunk are covered too.  Stop and think and I recognise there is more and more over him.  His wee face which has been so severely affected for such a long time is not too bad.  Relief, although there are signs that it it coming back there too.

His eyes are also getting mucky more and more.  I think that is an allergic reaction too.  I have mucky eyes and I guess, unfortunately he will too.  Get one allergy, get them all!

Again, as his eczema got infected and then worse, there was a marked deterioration in his behaviour.  He was tired and tetchy, itchy, hot and bothered.  Any one of those could spiral in a messy situation with them feeding off each other.  He would then become upset by anything.  Crying would make him hot……. itchy…… tired……

My hands have been driving me mad again.  They’ve been infected and awful again.  I’m back to the 10minutes after I wake up ripping them apart, so any night time healing is short lived.  Hey ho.   Not helped that I have been potty training daughter which means loads of handwashing - thankfully we seem to be there, but she can’t get onto the toilet herself and I will obviously have to clean the potty.  Lets hope we don’t have any accidents at James’ appointment tomorrow!

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29/05/2011 by spindlygiraffe.

Well certainly the new cream was keeping James’ skin at a decent level, not clear, but semi-acceptable.  However it has run out.  I have such a multitude of tried /  tested creams, half empty tubes from which I am left to pick from to carry on with.  I can contact my doctor to see if I can get more, although it was the dermatologist who prescribed…. I hate contacting the doctors, it is all to regular.

I have gone back to protopic 0.1% but already he has been much itchier.  He has never said about it being ‘burning’ or ’sore’ but last night I thought there was no point in going to bed as he was up scratching so much.  Thankfully it settled down.  James never really complains about discomfort, it is just his life and he accepts it.

It is good that we have not used Elocon for almost a month now.  I am not overly cautious about using steroids but, in the back of my mind, I am aware that he is only 4 and has had a fair amount of steroid usage on delicate skin.  He has needed it though and it would be worse left untreated.

Tonight he is already hot and itchy.  It is funny with the weather at the moment.  I have been in already this evening to replace his duvet with a blanket and turn on the fan.  He does get hot so easily.

My skin is quite dry at the moment.  Finally my hands are much better than they were.  As I write I have no plasters on my fingers.  I have got a hack between my thumb and first finger - I think I saw it happen.  It had been itchy and then I just went to lift something, as I moved my thumb and finger, the hack split open.  When I was younger we used to get pure lanolin and that worked really well - thick yellow stuff that worked like polyfilla.  I’ve tried lots of creams over the weekend, at the moment my hand is yellow with my daughter’s nappy cream - anything is worth a go!

Overall though, he and I are not too bad at all.  Long may it continue.

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21/04/2011 by spindlygiraffe.

Yesterday we were back at our GP.  A positive outcome for the future but nothing to stop the current itchiness.  Looking at James’ diary, 4 years, when he was months old we went to the out of hours doctor.  It was the Easter weekend, first weekend in April.  His eczema was really bad then.  All they did was put him on so much piriton he was only awake occasionally.  I know most see piriton as a washout, but for a tiny baby………… it was horrible.

Last night he was up and scratching.  He has the fan on in his room as he is so hot.  I was thinking too much and did not get back to sleep before he woke again.  This morning he woke early.  Brilliant, tired and irritable 4 year old and tired and irritable Mummy.  He’s already dissolved into tears about silly things this morning.  At least I know why, but this rarely helps when I am easily would up.  I go from being really cross with him to really upset due to his skin.  His eyes were so swollen and infected he could not really open them - hence out gp outing.  Today is our last day at home due to his adenoids operation.  The doctors surgery was the first outing in two weeks (not officially meant to happen).

My hands are still itchy.  Yesterday I had a frenzied few minutes of pulling them apart.  I was so hot!  I nearly turned the fan on in the living room.  It was not that hot yesterday.  It did work as a reminder though as to how hot he must feel, how that aggravates his eczema, that makes him hotter, aggravates his eczema- I guess you get it.

Basically, I think this must be a bad time of year for us both.  I guess we will both get through it.  He won’t have any idea that I’ll be expecting it again next year.  Why does it tie in with the Easter weekend?  Easter changes, it is like a sixth sense knowing when bank holidays are and doctors are closed.

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