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 »

05/10/2011 by Admin Kirsty.

This blog entry marks the end of a fight with the Department for Work
and Pensions, nee Benefits Agency. I wish I could say the war was done,
but still we fight the DWP regarding our daughter’s care needs.

Last year, on-top of my IBS and ME/CFS, I developed a rather nasty case
of pompholyx - “hand eczema”. I didn’t know it was eczema at the time -
a small cut got infected, and my hands started blistering. This prevents
me from cooking or washing, and can sometimes make walking even harder
(I also get it on my feet). It doesn’t go away; I’ve had only around two
periods of less than a week where I had no blistering or weeping in the
last year. This put even more strain on my gorgeous partner and carer,
Twitter’s @dombed. We were filing a claim for DLA for our daughter
(whole other story!) when we noticed that I also qualify. So I applied
in September 2010 believing I should receive the Lower Rate Care component.

Having read other peoples’ experiences and advice on the internet, I
didn’t expect it to go smoothly, and sure-enough, it didn’t. At this
time I was still undiagnosed, and my GP believed it to be contact
dermatitis. He also wasn’t fully aware of the severity, as I’d been
attending the Nurse Practitioner owing to her increased accessibility,
so his report wasn’t particularly supportive. I, of course, requested a
reconsideration and the DWP duly dispatched an ATOS Origin Dr to my
house to investigate my claim. He came along, was quite pleasant &
thorough, did his report and left. I didn’t think there was any way that
the reconsideration could go anything but my way after he’d seen my hands.

But again, things didn’t go smoothly. The DWP simply ignored chunks of
his report. He said my hands suffered “substantial impairment” in the
report, but the DWP decision stated I suffered “slight impairment”. He
said I can’t cook. The DWP said I can. I got confirmation of a pompholyx
diagnosis, but the DWP didn’t care. Off to tribunal went the case, then.
This was when the DWP decided now would be a good time to make life that
bit more stressful, and perform a migration on my claim from Incapacity
Benefit to Employment & Support Allowance (ESA). Great timing, DWP!
They didn’t even make this simple; scheduling problems resulting in ATOS
making threats of benefit cuts while the DWP tried to help find a
workaround for us.

My ESA Work Capability Assessment went well. The GP seemed to understand
my problems, and it went pretty smoothly for me.

Not-so-smoothly for the poor elderly lady sat in an empty waiting-room,
while the staff were on lunch, having been sat there for 3hrs after
being told to wait.

I hate waiting, so phoned the DWP to get the result of my ESA migration.
I was told that I’d been placed in the Support Group, which I think made
the call-handler confused when I then asked for a copy of the ATOS
report. I planned on submitting it to the DLA tribunal.

Wednesday came, and off to Norwich we went for my Tribunal hearing.

Clerks were great - friendly and informative. The actual tribunal didn’t
seem to go very well.

It was held in an office-room, with a table separating the two chairs
for the appelant from the three chairs of the Tribunal members. It was
much closer quarters than I had expected. A male consultant surgeon to
my left provided the medical advice; he was pleasant, understanding and
helped cut through some confusion from the Chair. To the right was a
Disabilities Advisor, who was there to provide life-impact advise to the
Chair. She was also pleasant, but very quiet. She hardly said anything.
The Chair herself was quite stand-offish and slightly intimidating. I
felt like I was probably wasting her time.

The surgeon asked questions, then the advisor did, followed by the Chair
who then said they’d decide that day and write with the decision.

I really hate waiting. When you’re sick and/or disabled, you often have
a lot of time on your hands with little or nothing that you can do.
This makes you think about things more than you would otherwise. Being
told to wait for the post is like being sentenced to up to a week of
stressing.

So Friday morning I rung the Tribunal Service, hoping they’d tell me
what the result was. Turns out they’re not allowed, so I tried the DWP.
A nice lady at their call-centre said that the system only stated
“appeal allowed” and didn’t know what that meant. She said they’d sent
me a form, but would ask me the questions and send an email to the
department to hurry things up. She then asked if my bank details were
correct, and if I’d been in hospital overnight since the appeal.
The post came - a brown DWP-ish envelope, creating hope that it was the
decision. It wasn’t. It was that ESA ATOS report. Only two days too late
to be useful.

Did I mention I very much hate waiting? Friday afternoon I tried again,
figuring they may have updated their systems. I was right - another nice
DWP call handler explained that I had won my appeal and was being
granted a 3yr award of Lower Rate Care, starting last year!

Irony upon ironies, while sorting the notes for this on Saturday, the
postman came. With a Tribunals decision notice. Did you know that the
Tribunal Service has no enforcement power..? Meaning the DWP can just
ignore them if they really wanted?

So this case, which really wasn’t that complicated because it only takes
one look at my hands to realise the difficulties I face, took over a
year to come to it’s conclusion, and only did so correctly because my
partner and I were willing to fight. I’ve no idea how much extra money
this all cost, the lawyers, the decision makers, the Tribunal staff, but
it shouldn’t have cost it. I do know how much stress it’s caused to
myself, my partner, our family, but it shouldn’t really have cost it
either.

But this fight is done. For now.

Craig.

(Originally posted at Nottingham Eczema Support:
http://www.nottinghameczema.org.uk/blogs/Thingamablog/archives/posts-from-craig/index.html
)

Posted in General | 1 Comment »

26/09/2011 by spindlygiraffe.

School is going well.  No wheezing, little sniffles and coughs but that could be expected.  I am so pleased with how well school has started off.  What a great teacher to start off his schooling - 14 years ahead…

His eczema is not too bad.  His face is really quite clear at the moment.  When he cries I fear we will be back to square one, as the redness appears, but it is pretty short lived.  After waking up scratching and coughing for a few nights, he seems more settled again.

His body has been relatively good too.  Coconut oil works well in his hair (even applied just before hair wash).  His hands are still pretty bad but given the rest of him is ok, we can cope with that.

I am so relieved that he has had a ‘clearish’ start to school. Unfortunately it is difficult to look at someone when their face his puffy, inflamed, sore looking and their eyes exhausted.   Kids and staff have seen him how he should be - my wee man just bouncing with life.

Posted in General | 1 Comment »

09/09/2011 by spindlygiraffe.

James has got on well this week at school.  Yay!  It is such a relief.  I am delighted he has been told to use a ‘classroom voice’ as he is being too loud.  I would prefer that to need taming rather than being too quiet, which is often the case.  He likes to hide behind people.  His teacher is brilliant and will sort him out!

Handed creams over the first morning and all seems fine.  Yesterday, I got called over at the end of the day.  The teacher was concerned about James doing cooking and putting his hands into the food to mix.  I said he would be fine and just to make sure he washed and creamed his hands afterwards.  Then he added it was more a concern regarding hygiene with the other children.  His open cuts being put in the mixing bowl. Ermmm, I don’t know, never really thought about it.  Obviously the cotton gloves are not that suitable but in school they have latex gloves.  So we decided to try cotton gloves with the latex gloves over them.  He could have had his own separate bowl but that would have made him stand out from the class.

I have phoned the GP to see what they would suggest.  I will phone next week and see what the response has been.  Today James told me they had made apple crumble and he enjoyed eating it. (I spoke to him last night about wearing the gloves so he was prepared!)  Wonderful peer pressure, he does not usually like crumble.

They have a school trip to Pizza Express in under 3 weeks.  I wonder if it will be the same then with double gloves.  I presume so.  I just wish I was going - a school trip that I have never been to with my own class and always wanted to.

His eczema is good at the moment.  Coconut oil really does help his scalp and back of his neck.  I am so pleased that he has started school this way, so relieved.  Good skin = good sleep.  Now to step the creams down again and monitor it.

Posted in General | 2 Comments »