29/08/2011 by spindlygiraffe.

In a week’s time, his uniform will be out, his PE bag packed and he will be setting off for school.  Full days from the start.  Is he looking forward to it? No.

Does he have a choice about it?  No.

How do I feel about it? OK ish

Will he be ok? Definitely.

His teacher seems ace and I’ve heard fantastic reports about him. (Just had to go in to James, itchy, awake, disturbed sleep… hate it).   I’ve written notes for the teacher.  James has informed me he will not put on cream in school.  I think he will do as he is told though, if they can just get him in the habit, break and lunchtime.  Then it is up to them at other times of the day, as appropriate, to remind / tell him.

James does not like change.  He does not want to be away from me.  He does get anxious.  I get anxious too, I get anxious about him getting anxious.  When he is anxious he scratches.  When he worries, he scratches.  When he is concentrating he scratches.  He thinks nothing of pulling up his t shirt and having a good ol’ dig at wherever is itchy.  When he gets hot is head gets really itchy.  I imagine after playtime all he will be able to do, is scratch.  Not nits, still eczema.

In reception they have lots of practical, messy activities.  I hope he uses his cream.  He has huge hacks on his hands at the moment.  Really deep.

I worry about what others will say, I was looking at his little arms today as he was wearing a short sleeved t shirt.  What about his ankles and feet when he is doing PE?  I have a book ‘Rachel has eczema’ from the library, but I don’t want to make him too conscious of his skin.  We haven’t read it together.  I’ve said little things about others not having to have cream, he knows his sister doesn’t

So many questions, only time will tell.  I don’t think the fact that being a teacher and knowing how busy the classroom is helps.  I know how difficult it can be to look after all 30 pupils and ensure they have what they need, where they need it.  Eczema is just another thing to add to the list.

I worry about his tiredness.  I expect reception children to be tired.  But James goes to bed at 7pm and sometimes is not up in the morning until 10am.  Regularly he wakes at 8.30 /9am.  We need to leave by 8.30am, he’ll get home at 4pm.  Bedtime routine already starts at 6pm, I can’t be bringing it earlier.  He needs to have some time at home with us.

Things will sort themselves out.  I think legally they do not have to be in until after their 5th birthday.  So if it isn’t working, I’ll have to come to an agreement with the school.  Not sure that would go down well with the head, but hey ho.  I’ll do what works for James.

Posted in Children and Eczema | 6 Comments »

21/08/2011 by spindlygiraffe.

In my last post I said that James was to have a dermatology appointment.  As always I am looking for answers and this time went armed with a list of questions.

His eczema on the day was ok on his face, everywhere else was driving him insane it was so itchy.  ‘I just can’t stop scratching.’  I think I have commented here that it has slowly been deteriorating but at least we had a break from Elocon.  He had little infected bits, but nothing too extreme.  The hacks on his hands were looking better too.

I’ve always been very positive about the dermatology nurse we see.  She did reassure me about using the protopic 0.1% and the synalar steroid.  I had decreased the protopic to Mon, Wed, Fri.  She suggested that consecutive days was better.  So I am trialling using it at the weekend.  The steroid, again reassured as long as there are some gaps…. there aren’t.  So I’m using the Elocon to get rid of infected bits and elsewhere to hopefully give it a rest for a few days.  I did not use any steroid last night or tonight, my husband commented that James was not scratching too much in the bath.  Phew.  The nurse did say when you come off them you expect that it will flare up, I wonder how long I will hold off without putting any steroid cream back on?

Overall though, I felt a little deflated.  Our next appointment is not until December.  Advice is pretty much carry on the same (with Dermol reintroduced for washing).  I so want new things to try, at least that way I feel like I am doing my part.  I really would do anything to make his skin improve.

Posted in Children and Eczema, General | 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!

Posted in Children and Eczema, Eczema and the Weather | No Comments »

08/08/2011 by Twenty12.

Hello everyone, 

This is my first time blogging for the National Eczema Society and I am very excited! Firstly to introduce myself; I am a 25 year old female and I first experienced eczema around 15 years of age where I would just get it on the inside of my elbows; something that was easily treatable with a course of topical steroid therapy and didn’t really cause me any concern and only slight discomfort. Before that I’d never experienced eczema (or any other allergy of any sort e.g, asthma) in my life and it doesn’t even run in my family, so we all just assumed it would go away after a while…  

….well it didn’t and at around 18 years of age when I started university, my skin, especially on my face and scalp, started to flare up quite a bit and it was very unpredictable. At this point my GP prescribed me topical steroids, which is the first line of treatment anyway, however now that I look back on the advise (or lack of!) I was given by my GP, I feel my lack of understanding on the way topical steroids worked led me to make my skin worse and more dependent on steroid creams. I have since learnt that using steroid creams correctly gives good results and I mustn’t listen to the entire stigma that surrounds steroid creams.

Eventually, a new GP referred me to an NHS dermatologist (after spending in the regions of thousands on various private treatments such as medical, herbal, acupuncture, chinese remedies, hypnotism and ayurvedic). Being referred to an NHS dermatologist was the best thing that happened to me as she got me into using Protopic 0.03% for my face and 0.1% for my body and also raised my awareness of eczema as a whole. This was a very big deal for me as my eczema mostly affects my face and the area around my eyes and as a result I didn’t have that constant worry of steroid side effects. She also got me into using different emollients which I found very useful in terms of controlling and comforting my eczema. Also, a blood test revealed I had abnormally low levels of IgE and I was diagnosed with atopic dermatitis. 

Now that I am 25 years old, my skin is still very unpredictable; one morning I will wake up and my face is lovely and smooth and the next it’s red, blotchy, very irritated and uncomfortable (I guess angry is a good word!). My scalp has taken a turn for the worst and I’ve lost a lot of hair due to the seabborhaeic dermatitis. Of course, all of this gets me very upset, especially when I have to be somewhere where I have to look my best, but just taking a few deep breaths and getting on with my day is what I have to do to take my mind off it.

I look forward to keeping you updated with my experiences…mental and physical, good and bad!

Posted in General | 4 Comments »