27/03/2011 by spindlygiraffe.

This week we had 2 appointments.  The first with the dermatology nurse.  Even she said we seemed to be getting nowhere, especially with his face.  Panda eyes and a clown’s mouth.  Back on the elocon, the leggings and long vests at night but maybe not one over his face!  I think she was surprised that they did them.  I think it would really help my son, but would be horrendous for him and for us putting it on.  As it is, he loves his new outfit and can wear short pj’s over them.  He loves short sleeves so this has made his day - we say he looks like a footballer too, so he is chuffed.  She also has booked to see him in another month after results from the allergist.  She is great but so overbooked.  Our last appointment had been postponed, this one has been double booked for her…….

James does not really like the stinging cream, but he had even been saying the epaderm hurt.  The dermatology nurse agreed that anything touching would hurt.  He has got a high pain threshold but I guess having it as in infant makes you a bit immune to regular pain.  The elocon that night was horrendous.  I knew I could not do it myself and waited for my husband.  It is so distressing seeing him in so much pain- no pain no gain -it doesn’t really help.  I hate it, all I can do is cuddle him tightly and not cry myself.

We did not really know what to expect from the paediatric allergist.  He had come off his Atarax antihistamine beforehand.  He had been waking up scratching etc.  That has since stopped again.  At the train station we bought our tickets and the man was friendly but made the usual comment ‘Oh, that looks nasty, what have you done to your mouth?’.  He was a lovely man, meant no harm, but makes you want to weep.  James just looks at me, with a, ‘What is he talking about, I have not done anything to my mouth’ face.  For him it is life.  (In pre-school they did about differences and he told me about one of the leaders having a red face - pot-kettle!)

The allergist was so friendly.  He suggests we do see a paediatric dermatologist; unfortunately they are very thin on the ground.  We will see……. He also prescribed steroid tablets and to try protopic (again, tried it previously twice, but weaker dose).  Bearing in mind he had been using the elocon, to still be prescribed this, it shows how severe it has been.  As a child my dermatologist used to suggest bringing me in for a hospital stay, Mum never went for this as I was in so often with asthma, but I never took the steroids for eczema.  Although they did help my skin post asthma attacks!

James has only had steroids once before for his breathing.  He took them fine then.  Unfortunately, this time, I forgot to warn him about the taste.  They are soluble and he spat it out immediately!  My husband was in the bathroom where we were and he shouted at him.  James is such a good wee boy that he was distraught.  I was left with a sobbing child and half a syringe of medicine that he hates.  Finally he calmed down enough for me to try again.  This time, chocolate button in first (dairy free!) followed by medicine and another button.  I thought he was going to be sick.  He wasn’t.  I’m so proud of him.  It has worked since and tonight he came looking for the medicine (although perhaps it was more the buttons he wanted).

So the allergy testing.  Tested him for pretty much everything.  Allergist predicted it was not going to be food as he has no problems with his bowels and often if it is bad on the outside, it is bad on the inside too.  James is due to get grommets in (again) and his adenoids out in 2 weeks time, so the allergist suspected it might be more an inhaled allergen - dust.  Well that is kind of to be expected.

Results came back, slight reactions to egg and milk and all the rest were clear.  That means we have not been feeding him evil foods.  It is also not my lack of dusting that has caused it! (Phew!).  It could be seen as a negative that they did not discover the allergen.  That would have been useful, but potentially restrictive.  Now I can stop analysing everything he puts in his mouth.  Stop thinking, oh it could be the bread, fruit pastilles, tomatoes……. believe me - I had considered it all.

So as a Mum I found my experience really useful.  It has not necessarily helped his skin (apart from the steroids obviously) but has made his diet much easier.  I’m not so fretful so that must be good for him.

Posted in Children and Eczema | 1 Comment »

20/03/2011 by spindlygiraffe.

Tomorrow my son has another appointment. The last one was in January.  Within two weeks of the appointment I was taking photos of how bad it had become.  We are currently seeing a dermatology nurse, she is ace!  (Previously we saw a dermatologist and a locum doctor recommended we got a second opinion.)  She tried to change the cream last time but he seemed to react to it.  So we had to revert back to the old stuff.

The day after taking the photos, a letter came saying our next appointment was postponed.  I was beside myself…… but there is nothing much you can do!  Last week I got a phone call about a cancellation which is sooner than the new appointment.  It ties in well as on Wednesday we are off to see a paediatric allergist.  My son is off is antihistamine (but has actually still slept through the night!), so things are not too great.  I will still bring my camera of photos.

I’ve also stopped using any of the bath stuff.  He was scratching so much in the bath that it was a really stressful time.  After swimming a couple of weeks ago, he had a shower, then lots of epaderm (my wintertime favourite!) and did not seem so itchy.  A doctor once recommended just water rather than anything else, I thought she was mad as it really dries my skin.  However, for him, it seems to just be about putting loads of ointment on afterwards.

I do get my hopes up, that this time we will discover the cream that works for him….. this week we have the double appointments.   I will also bring with me my list of questions and some paper to make notes on what she is saying.  Even though my kids are well behaved (I think!) I do struggle to concentrate and remember everything that is said when keeping an eye on what they are doing.

Posted in Children and Eczema, General | 1 Comment »

19/03/2011 by Admin Kirsty.

Friday 11th -13th March saw a variety of NES staff and a volunteer manning a stand at the above event.  Unfortunately, the event itself was a little quiet on the Friday (and it was cold!) but understandably busier over the weekend.   As expected, it is true that if we go to “family events” the precedence of eczema is such that we will find people with eczema and indeed we did!  We gave out loads of free information and advice about Living with Eczema to adults and children alike.  It was good to meet people there.  We’ll be out and about at other Events throughout the year.  Keep watching the website and if we’re in your area at any point we really would love to see you there.

Posted in What's happening at the National Eczema Society | 1 Comment »

12/03/2011 by spindlygiraffe.

This is my first ever blog.  So I will start with an introduction to who I am and a reason as to why I am writing this.

My eczema started when I was 6 months, I have the asthma, hayfever and anaphylactic reactions to go with it.  It’s had great spells and some bad.  Funnily enough other people remember it being much worse than I do.  It was just life.

My son is 4 years old and has had eczema since he was a few weeks old.  When the health visitor flippantly said ‘Oh it is just a little patch of eczema’ and I burst into tears everyone probably thought I was overreacting.  Since then I have cried, I have been desperate to do something and I have got cross ‘Stop scratching’.  I hate myself saying it, I know it makes it worse but when he and I are both tired, he is scratching… it happens.  I am sure I am not alone.  Is it worse sitting by whilst he rubs his hands on his clothes or carpet (the pavement outside)?  I want that magic cream to take away the itch, takes away the redness.

So why am I writing this?  Having had eczema myself I have some ideas what it is like to go through.  To be a teenager, not being able to wear make up (I still don’t, but I wouldn’t have to now), as a student and when I moved to a new place.  Now, with my son, his started much earlier and I now know what my Mum went through with me.  It is so hard seeing the one you love in pain, discomfort and superficially not looking their best.  Heart-breaking.

My intention is to write so that I can highlight the good when things are going well, but also to voice off when things are not so good.

Posted in Children and Eczema, General | 3 Comments »