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 »

18/04/2011 by spindlygiraffe.

My son is now off the elocon (for just over 2 weeks) and the prednisolone (for a week).  We are trying the protopic 0.1% and have just come off using it twice daily for 2 weeks.  I wish I could say he had responded really well and it is great that he has a breather.

We were meant to have a dermatology appointment today.  However, having had his adenoids out I had to postpone the appointment as he should not come into contact with people and possible infection risks.  Our new appointment, the next available, is in August.  Despair!  The dermatology nurse who we see if lovely, but madly overbooked.  They need to double her at least.  The appointment today was a double booking already.  I did leave a message last week, as she was on holiday, hoping that she will get back to me and see James earlier than August.

Whilst on the prednisolone his skin was slightly deteriorating.  We’ve tried protopic 0.03% a couple of time before and I found it useless.  However the paediatric allergist suggested it again and I will always try things, especially with the prednisolone to blast it.

Today was constant scratching.  T shirt up so he could scratch round his waist.  His arms have a few patches (not yet joining each other) and his poor wee face.  He has started rubbing his eyes and his mouth.  Digging his nails into his chin and neck.  I know how he feels yet am so helpless to help.  Cold things help, but at the suggestion he gets agitated, cries and makes it all worse.

I thought about going back to the GP and requesting  another referral.  The paed. allerg. did suggest that it might be worth going for a paediatric dermatologist.  Problem is there are so few of them.  People talk about the postcode lottery.  Wouldn’t it be great to have a paediatric dermatologist at our local hospital?  Wouldn’t it be great if eczema could be controlled, then eliminated.

With the adenoids out though, we are at home 24/7.  So I have a week more to think about getting this appointment.  Might see if eczema nurse gets back to me.  I know that she has more than enough on her plate, coming back from holiday to all the usual…….. but my son is important and I would do anything for him.

It seems that great strides seem to have been made with asthma treatment.  Perhaps soon, some real progress will be made for eczema.  So many people suffer, like with asthma, to varying degrees.  To alleviate a proportion of symptons would  be incredible.

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10/04/2011 by spindlygiraffe.

My goodness my hands are itchy!  I was only going to write about my son’s eczema but……. It must have been a month now that I have been beside myself with itchiness.  It’s strange how tearing your fingers open so they bleed can bring such relief!

The worst time is soon after waking up.  I have my ‘good old cotton gloves’ (industrial strength as I scratch through the rest - fingerless are not much use), but I get up and take them off.  I am usually off to one of the kids’ rooms.  It is short lived as I start rubbing, trouser waist band is great for scratching with, engagement ring has a nice sharp edge, I get more and more irritated and edgy………. back to get the gloves.  Unfortunately my 2 year old thinks it is great to pull them off my hands and to wear them herself!

I’m trying to do as little as possible with potential irritants….. getting them wet, bathing children, washing up, even peeling potatoes today - I asked my husband to peel them!  When I am trying to change my daughter’s nappy the sticky bit sticks to the plasters.

Thank goodness I do not have any allergies to plasters!  Tesco strips are cheap, but look tatty really quickly.  They don’t tend to last terribly long, before they get torn off in an itchy frenzy.  One thing I have learnt over the years is to cut plasters off.  I don’t fully understand why.  Perhaps it is psychological or perhaps pulling them off pulls the skin a bit more and therefore causes irritation.  I don’t know, but if I don’t cut them off, or take them off and wash my hands - the itch returns with a vengeance.

My hands look horrible.  They always do, police would have a hard time trying to finger print me!  At the moment they are particularly bad.  As I was growing up, I was pretty ashamed of my eczema and the idea of someone touching it I found repulsive.  My husband was always so caring and when my hands were sore he would hold them (pressure helps too!).  Much as I appreciated this, I felt slightly awkward - what must he really be thinking…. my skin is so gross!  It’s not until having my son, seeing and touching his poorly skin that I have been able to understand my husband.

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10/04/2011 by spindlygiraffe.

I have to confess to feeling like a bit of a nutter at times.  My son is over 4 years and I seemed to spend the first 3years and 9 months at the drs.  I always worry that I am being a nuisance but have to say our GPs are brilliant.  They have all the time for the world for you and manage to fit you in, even when they are already full.

6 months ago we had our first eczema free spell.  It also tied in with not having antibiotics and general ill health.  I put the two together…… disturbed sleep, body fighting off infection, irritation, distraction, puffy face…….  The waiting room had become like my second home, my seat stayed warm!

I feared that they would need an additional GP with the arrival of our daughter (who is now 2 yrs).  However she, touch wood, is pretty healthy.We have pushed to see dermatologists (yes, plural due to a second opinion), we have been referred to a dietitian, speech and language (twice), about his eyes (they are fine- health visitor referral), ENT (twice), allergy testing… of course we have made use of the out of hours dr and been admitted to hospital for his breathing.  Never mind all the scans and X rays when he jumped off a wall and landed awkwardly.  We have also privately had one off appointments with a dermatologist and paediatric allergist, leaving our GP with recommendations.

I wonder how many of these are connected with the eczema - is the runny nose linked?  Has the constant runny nose led to the glue ear and the insertion of grommets, and to infected adenoids and a second bash at grommets?

I’m not medical at all.  I do put my trust in the health professionals.  I have to!  I have had my own experience of eczema and therefore know bits about it.  It’s still trial and error with my wee boy.  He’s just had his second op on Friday for adenoids and grommets - his nose has been streaming since.  However he has just come off prednisolone and elocon so his eczema is not bad at the moment.

I hate going to the doctors.  I phone them up (I do have a ‘not local’ accent) and they know who I am without me saying!  I know of others Mums who say they live at the drs too.  I am lucky though, as I say my GPs are all super.  I would try to get my husband to take him after work so that I would not have to go.  We’ve had a mixed bunch who we have been referred to.  Some have been very useful, I guess we have to keep pushing.

Posted in Children and Eczema | 3 Comments »