To be a little bit upset/miffed/whatever by what my DS's teacher said?

[chegirl]

Ok not an anti teacher rant honest and I do mean I feel a bit upset - not outraged or anything.

I like my DS's new teacher. I am really impressed that he took the time to read up on DS's SN before term. He knew my name on the first day and seems to be geniunely open and interested.

I am a wee bit sensitive around the subject of DS's skin condition. He has severe atoptic eczema and he is affected very badly by it. We have spent years trying to get it under control and at times he has looked like a burns victim. It has taken a lot of hard work to get it to the state it is now which is not perfect but so very much better than it was last year.

I have always been open with the school and it took me some time to get through just how serious DS's condition is and how it affects him. I thought I had got there particularly as the new teacher seemed so ready to listen re DS's other addtional needs.

Anyhooo - last week (yes I really have been brooding for that long) he pulled me aside and said
Its about Ds's eczema..
Um yes?
Well its very bad
Um yes..
He scratches a lot and his skin is very red
Um yes, he has very bad eczema...
Well that cream you gave us doesnt work, his skin is still bad...
Its just his moisuriser, it wont cure the eczema, its part of his skin care regime...
Well we think it makes it worse...
No it doesnt...
Well anyway, do you think you can do something about it over the weekend? I mean can you sort something out?
Um sorry but there isnt much I can do, his condition isnt curable and we can only try our best to control it..
Yes I understand but the thing is, its very hard for us to have to watch him suffer...

Flippen eck. I know he is lovely to be concerned but I wish people would try and understand that some people's eczema is not just going to get better with the right cream, diet, tablet etc.

We have been trying for years to sort our boy out. He sees the dermatologist every few weeks, he has been allergy tested, my housekeeping regime would astound Kim and Aggie (allergy to dustmites), we have redecorated house, use special cleaners and laundry products, spend hours on skin care daily, wash wash wash bloody everything, hoover and dust like a OCD sufferer on crack .....

In the past few years I have been told that I should 'really do something about that poor boy's skin', asked 'what the hell have you done to him?', told 'if you really wanted to you could make him better', been accused of keeping him that way to claim benefits...

Our dermatology specialist nurse is wonderful and assures me that we have done wonders with DS. But I get really sad when I see him crying and scratching and now he has begun to comment on his 'skins' and how people sometimes say 'errrr' to him.

So poor teacher has hit a raw nerve and is certainly oblivious to upsetting me but I cant help it

I am bloody pregant so am I allowed to be a bit UR?

edam - I think there is a floating nurse that comes in on certain days but I have never met her. Which, thinking about it, is a bit strange as DS has medical needs.

I am off to bed now. Thank you all so much for your supportive and practical comments.
They have given me a real boost.

Ta ever so.

One thing that my parents thought - rightly as it turned out - was that when I was young all the creams and lotions needed to feel nice and be soothing. When I was older (teens) and had more self-management of the condition, I could tolerate treatments that had more effacy, but could sting a bit, because I was able to rationalise that short term pain led to long-term good results. Something a wee boy certainly can't do at present, but might be able to in the future.

Chegirl they probably don't have a resident school nurse (very very few state schools do now) but there will be a school nurse allocated to the school. Most nurses have a cluster of schools so only visit as needed or as requested.

Ask for their number and arrange a meeting. Also ask your specialist nurse to come to school, IME most specialist nurses are fab and are more than happy to educate school staff about conditions.

YANBU agree with previous - but it is good that the teacher gives a toss, even if they have an arse-about face way of expressing it to you.

My son has the same i feel for your dd and you, the teacher obviously doesnt know alot about having a skin condition.
maybe give him a book to read up on it or get your dermtolgist to phone him up and explain that you can only get on top of it, their is not alot else you can do.
I don't think anyone who hasn't got ezcema can really understand even doctors.

chegirl - sorry, don't have advice. Just wanted to say that you sound like a lovely mum. (Love that he has his own part of the garden).

YANBU in the slightest. I'd ask if there was a way that the classroom could be cleaned more thoroughly. I know that my dd's is only done once a week (if that) and not very well. Her divine teacher has a quick scoot round with some wipey things before the kids arrive. Currently her school is on high alert for swine flu, in the beginning it was almost sparkly, now it is back to the sad, grubby look.

Chegirl- yanbu but as you know until you have dealt with sever atopic excema yourself you don't know what it's really like.

I had all those 'what have you done to her face?' etc.

People just don't get it.
Congrats on your pg btw!

Chegirl, I remember last year when my ds had difficulty settling down at school the teacher said "it sounds hard, but he needs to learn to grow up" I felt sensitive and upset, but later on when she got to know him better she was more understanding.

YANBU

Would the derm nurse write a letter to the class teacher, he doesn't understand the full extent yet?

This is probably a pointless post but for years I suffered from severe excema on my feet. Nothing I used made a difference, and like you I tried everything. Some days it would be too painful even to walk.

Eventually a leather allergy was discovered but synthetic fibres made the problem worse. This went on for a good few years. Then, suddenly, it went away. It lasted approximately 7 years or so and now my feet are excema free and not even scarred. I can even wear leather again. Tis very odd.

There is a gap between the teacher's understanding of your son's excema and the amount of hard work you put in to help him.

So what I would do is type a list on an a4 piece of paper with everything you do at home.

You never know the teacher may say 'oh we can do that here too' which would be great. Then no judging, just caring, and a possible better outcome within the school.

hi chegirl - i have had atopic eczema since i was 6 weeks old , my dd (3) now has atopic eczema which is bad atm as she has her first infection in it , your cleaning regime is exactly the same as mine , hoover 3 times per day & wash wooden floors every day & dust twice a day , my heart goes out to you & your ds as i know only too well that sometimes no matter how hard you try its almost impossible to control eczema ,
i really do agree that it seems like a lack of information on the teachers behalf rather than him trying to be mean , its a very good idea to give him a copy of the eczema society magazine , it will help him understand that there are NO magic creams to clear up eczema , sending you a very un/mn hug

Chegirl, this bit:

"Well anyway, do you think you can do something about it over the weekend? I mean can you sort something out?
Um sorry but there isnt much I can do, his condition isnt curable and we can only try our best to control it..
Yes I understand but the thing is, its very hard for us to have to watch him suffer..."

Makes me so bloody enraged all the emoticons in the world won't cover it.

I'd be inclined to write to the sodding Head Teacher detailing the exchange and making a strong complaint regarding the teacher's moaning that your son's extreme suffering - which your whole family is stressing themselves out to try to alleviate 24 hours a day - is upsetting him.

How fucking DARE he.

Sorry - do ignore me! Can you guess one of my DCs had terrible eczema? In his case it was food related so is now very well controlled and you wouldn't know he had it.
But I remember the stress and distress of trying everything and a conversation like that would have tipped me over the edge.

Luckily, you seem calmer than me.

chegirl, I suffered from severe atopic eczema as a child (and still do, but obviously as an adult I manage it myself) and know only too well how miserable and awful it can be. (think bleeding, weeping, bandages etc etc etc, and just the sheer misery of being in pain and itchy all the time)

Can I make a suggestion? I have recently discovered E45 anit-itch cream, and I cannot tell you how this has changed my life.

It stops the hurting and the itching, and really helps cut down on the skin damage.

Please please give it a go with your ds!

I think you need to make an appointment with the teacher to sit down and properly discuss his eczema and creams and also to discuss the fact that the school gets cleaned so rarely and what that means for his skin. SO that they know that the school is likely causing him to flare up, not your treatment of him.

Poor you and DS Chegirl, I am sure he is trying to be helpful but he just doesn't understand the condition quite obviously - you may have to do some educating!

I remember at college I was quite stressed in my final year and got eczema on my face from my eye to my nose and the skin round my eye cracked quite badly and was sore. I put creams on it to help the soreness which made it red and shiny. I got several comments from people but one of my tutors came up to me one day and told me I should stop picking at my face because it looked terrible! I nearly punched him. He could not get his head around the idea that I hadn't somehow self harmed because my eczema was stress related and only flared up on occassion.

YANBU I have had atopic Eczema from day one and reading what you have said has angered me, though he sounds like a nice teacher it seems as though he does not have a clue about the condition and that it just wont magically go away and everything will be 'normal' again. My dermatologist said onece to me that it is a disability though obviously not as severe as some people i know who have epilepsy, diabetes. It just shows a lack of information and ignorance, if you are concerend i would have a word with the head, mabey staff could go on an Eczema awareness course if there is one, or be encouraged to read up on the condition to make them more aware.

I am an adult and i still have it especially on my hands it does not look all that nice but its something i have to live with for the rest of my life. You are doing all that you can and know it and you are seeing the dermatologist so jsut i know its hard try to ignore him and just stick up for your ds. Have you contaced the Eczema society they are quite helpful with info

Yes a meeting is better, with literature, lists - clear information - and propose ways you think the school could help.

chegirl i understand what your little boy is going through, as my dad had to wake up in the middle of the night when i was sractching myself raw (5-6 years) and put loads of E45 and bandages so i looked like a mummy, on arms legs everywhere, they had to be pure cotton and not those elasticy ones in the shops. I am so glad that at the moment my dd 2.6 years does not have it the relief is overwhelming becuase i would hate her to go through it. Thre are times when my parents had to be called to my school because it was so bad that my dad had to bandage me up with omallant. My heart goes out to you chegirl and your little ds

teachers dont have much idea when it comes to ezcema etc,
stick to your guns, repeat that this child is now at a far better level of control of his skin that it was some time ago.

underline again, that its not curable and his is a severe case. spend time underlining the full impact of living with severe ezcema,because the next thing will be her moaning that he is sleepy in class and asking what time he goes to bed!

take this as a chance to set the record straight with severe ezcema, she has got to learn something about it, as your child wont be the only one she sees these days!

Of course YANBU - sounds like a very upsetting conversation and given all you and your DS have gone through it is no wonder you are upset.

Having said that, I do wonder a little what the situation must look like from the teacher's perspective? Obviously he was being a thoughtless and ignorant but it sounds like he is a nice guy who really cares about the children in his class.

I don't know anyone with ezcema and would have no idea how one goes about treating it or how bad it can be and imagine that if I did see a child suffering from it badly I would be upset too. I like to think that I wouldn't say anything nearly as upsetting as what your teacher said but given the sensitivity around the subject it it might be very difficult to raise the issue without causing offence.

Anyway this is all very rambling but I wondered if it was worthwhile trying to see it from his side and - given his obvious ignorance - seeing his concern as a good thing albeit one needing education!

Oh dear - ezcema is such a horrible, horrible condition, isn't it? DH has / had it and it is just unbearable.
It is so hard for the family around the ezcema sufferer too - just so upsetting watching someone suffer like that.

I know it's very little consolation now, but DH did largely grow out of it - it comes back under conditions of stress and little sleep, but when he connected this with the ezcema, he made a lot of lifestyle changes and now we are ezcema free! Hooray!

oh Grendlesmum i am not so good at making lifestyle changes like i should like eating too many sweets and choccies which sets my Eczema off so muhc, and stress too like your dh plays a massive aprt. My bed looks like it has loads of Pedegg shavings on it poor dh. I also hate it when well meaning people go 'dont scratch' cause all i feel like doing is sitting on my bed having a lovely scratch

I am really touched by all your messges. They are so helpful and thanks also for the practical advice.

I am pleased that the teacher cares enough to notice and I am sure he spoke to me with the best intentions.

Ballon yep it was the line about how hard it was to see him suffer that put the tin lid on it!

Thanks for all of you sharing your experiences of eczema. It really helps to know that there are people who understand the real implications of living with this condition.

I am going to pull some information together for the teacher. I am going to ask for a good look at the classroom and ask about the cleaning routine. I am going to give our nurse a call and see what she suggests.

I think the teacher is very likely to take all this on board.

I am worried that DS is going to get worse fairly soon. The central heating will be going on soon and if we get cold winds he is bound to flare up.

The school have introduced a new pe kit policy this year. They want to keep them till half term. I wouldnt have minded for my other DCs at this age but its not appropriate for DS2. I will be brave and broach the subject this afternoon.

If anyone can recommend any good info I can download i would be grateful. I have looked on the Eczema Ass website and they have schools pack which is quite good but its a bit light on management info.

Thanks again. I am really glad I posted OP. Its been positive and productive. Plus I got a few sneaky hugs along the way

Chegirl - I have suffered from eczema on and off all my life, although never really badly - one thing I find is that it's often connected to the weather (?!) - when the summer changes to autumn I often get little patches and I think it's down to wind chill or something. Sounds very odd but if there is a pattern like this it may help to ensure the school are keeping him adequately covered if, say, there's a draught in the classroom/they're doing PE outside etc. Sorry if you've considered this already, I'm sure you've tried everything!

NB I also find avoiding water touching my skin helps - obviously you've gotta wash (not sure your little boy would agree ) but I avoid submerging the patches and that helps - sometimes that alone will solve it. I know that may not be an option for you if bathing is part of his regime but I thought I'd mention it.

Oh, and YANBU!