Eczema in 5yr old Losing the will to live!

[Jaffakake]

Ds2 has had eczema since birth, he's nearly 6 now.
I'm just looking for advice as I don't know how to make it better any more.

He's had periods of major flare ups and remission. Normally it's elbows that show the signs but it can be, like tonight, literally all over his body. He's scratching like crazy and I'm changing his sheet at least weekly as he'll scratch till it bleeds.

We've had good advice; a hv who recommended ointment as it's got no alcohol in it and a dr who recommended using steroid every 3 days just to keep on top of it. We've never been able to narrow it down to a food or specific environment and I've always felt that could be a never ending journey. Ds1 had eczema but it disappeared when he was 5 and moved schools.

Whenever I ask for a review at the drs I end up getting a locum and winding up at the start with a white cream he refuses to use because "it stings".

Tonight he had a meltdown (stupid reason and he's clearly tired) and his skin that was relatively fine yesterday flared right up as I was watching. Is stress a cause? I have psoriasis which is stress linked.

Any words of wisdom? Or experience of getting a more engaged response from the nhs? What should I be asking for?

Thanks.

Hi @Jaffakake I hear your pain. Dd is 7.5 has had eczema since she was 6 weeks old and rather than get better with age it has got worse. I also had a hugely ineffective gp.

Firstly, demand a referral to a pediatric dermatologist

Secondly have they prescribed antihistamines.for him to help with the underlying itch?

Lastly...what soap etc do you use for washing clothes for the whole family, bedding, towels etc. What cleaning products do you use for cleaning surfaces, bathroom etc?

Thanks.
They've never prescribed antihistamines, but I buy
loratidine over the counter and do use it when he gets hives or it's particularly bad, like tonight.

We've pretty much always used tesco colour tabs for the washing machine and cif cream and/or bleach to clean the bathroom. Dh uses dettol surface spray in the kitchen, I just use fairly liquid. We use windoline too. We have a cleaner who comes every fortnight and I do my best to top it up every other week. His sheets are changed once a week at the moment, but usually once a fortnight.

Ok, I'm happy for you to pm me if you want to discuss in private but my initial thoughts...

1. change the antihistamine to cetirezine it is better for kids. Obviously consult a medical professional but dd is on 30mg a day and up to 50mg when its bad, every day regardless of flare ups. I would start with a standard 10mg dose and see how he gets on.

2. dump the colour tabs and swap to non bio for all thing ds comes into contact with. If you use fabric softener use one of the white pure unscented ones. Wash ds things completely separate to everyone else's, once
   The wash cycle is complete put it on a rinse cycle to ensure all residue is removed

3. stop using any form of soap on ds for baths etc, we use sanex kids or the aldi version, you can wash hair etc with it

4. play around with cleaning products because for dd anything citric flares her so anything with lemon or orange oil in is out wilko and home bargains do apple ones

5. what steroid cream is he prescribed? Dd's consultant gave us some brill advice with hers but it deviates from the instructions you have been given. Use the steroid cream daily and for at least 3 days after the skin has returned to normal then a heavy moisturiser or emolient every day without fail, as much as he will let you. Swap his pj's to pure cotton as it helps stop them sweat. Also if you don't already change clothes and pj's every day regardless of whether they are dirty. Pollutants in the air are a big trigger for dd and they obviously cling to clothes.

If you want to chat I am happy to help. Dd is severe and is now on a mild dose of chemo to subdue her immunity so we have been through the mill with doctors and hospitals and endless regimes

DS grew out of his eczema but has never tolerated any supermarket detergents, even once he stopped getting eczema he still came out in a rash if I used the wrong detergent. I used to use Filetti non-bio, and now I use Tru Earth laundry strips (the unscented ones).

I am slightly left field here but have you thought about Chinese Herbal Medicine?

There have been some good results with it.

Worth a try? I don’t know where you are in the country but key is to find a medical Dr with a Chm specialty.

Look up Dr Richard Aaron. I'm an adult who has had severe eczema pretty much my whole life. This treatment has changed my life. I'd tried everything- I realise I sound like I've been brainwashed but seriously look it up. He's a South African and doesn't great in the uk now but there's a British doc who does using his method. My gp supports me in this treatment. I'd been under dermatology for years and had been on immunosuppressive drugs for several years. I'm not on any of these drugs now- look it up- i can't recommend it enough.
Hope he gets some relief- it's awful.

Both my eczema and my kids has been food related but once it's active then made worse with soaps, clothing, cleaning products. As a child my mum tried endless creams and no detergents etc but no matter how under control it got there would always be another flare up.

Eventually I outgrew it to a certain extent.

It wasn't until it came back in my 20-30s along with other symptoms that I was put on the FODMAP diet. I finally found what was setting off my eczema. Now it I eat something I shouldn't the rash appears within hours and I'm shredding skin. But the rest of the time I'm down to a slight rash response to some cleaning products on my right hand.

The kids eczema is also ok as long as they don't have triggering foods.

Eczema is aN allergic reaction/auto immune reaction.
I would push for allergy testing - you might need a referral to dermatology Specialist to get this done.

My DS had eczema and a night cough/wheeze from birth, turned out he is highly allergic to house dust mite. Once I followed the dermatologist advice His exzema and wheeze improved dramatically.
It’s quite a common Allergy - and your comment about his condition improving when he changed schools made me wonder if he has the same. My DS was Advised not to sit in the carpet at school (his legs were usually the worse affected area) And wear long trousers if possible.

We were advised to wash all bedding including his duvet. Pillow and any other soft furnishings, teddies etc at 60+ degrees. Both his pillow and duvet say wash at 40, but I wash at 60 with no problem. (I generally go by if it’s Ok to tumble dry, it’s ok to wash at high temp)
We use special pillow and mattress Protectors (towelling on one side and plasticky on the other)
If you can’t wash at 60, then to freeze for 48hrs.
He cannot be in the same room if we are dusting - the Dr said dusty surfaces are ok - it’s when the dust is disturbed that causes a problem.
Avoid carpets and soft furnishings- we’ve eventually replaced these for leather sofas and hard flooring. He has slated blind rather than curtains

The Others advice we were given was to Use emmoliant Daily - 2/3 times a day if skin really bad and continue Using even if skin looks ok.

At the first sign of a flare up use steroids daily on that area (Dosage depends on steroid - some are only once a day, others can be used more) apply steroid first, wait about 15mins before applying emmoliant

My DS dermatologist Told me the minute the skin reacts to something, the whole body is on high alert (as the skin is such a large organ) so the body becomes much more sensitive and starts reacting to other things that it wouldn’t normally react to.

Thank you everyone. Lots to think about and try. You've also given me the confidence to go and be assertive with the gp. We do have some good ones, so I think I'll pick one and wait if I have to.

Hi, OP, I've had eczema on and off since childhood, I used to have it on my arms, neck and at the back of my knees, but currently I only have a bit on my hands. I never quite grew out if it, but have learned over the years what triggers to avoid.

Laundry products - avoid anything biological, or highly perfumed. Bold and Persil both have reputations for irritating eczema prone skin. Also avoid anything that relates to restoring/protecting colours - these chemicals are very irritating to skin. Also, use less product than is recommended - you often can get away with using just half, and that way there is more chance the residue will rinse away. Or even just use washing balls (google them). I don't use fabric conditioners at all - not worth the risk and not needed, esp. if you have a tumble dryer.

I cannot tolerate ointments on my skin, as they tend to make my skin overheat. Most ointments contain petroleum jelly/AKA white soft paraffin, which is useful as a barrier to hold moisture in, but not great if your skin cannot tolerate the greasiness. Often GPs prescribe ointment as the default position (perhaps as they are cheaper?) but it may be worth asking for the cream version. Many creams contain small amounts of alcohol (perhaps as a preservative?) but not enough that the alcohol should irritate the skin. I find Aveeno cream is good for my dry face skin.

Pets - do you have any? I developed allergies to cats and dogs when I was in my late teens. Furry pets are best avoided if children are prone to allergies - it's just one more thing to cope with.

Stress - yes, defo a factor.

Good luck OP, it's very hard but maybe your 5yr old will grow out of it, as many kids do. Otherwise, remember the golden rule - the less chemicals and perfume he comes into contact with, the better. Some of the biggest brand names have the worst products, as far as containing skin irritants goes. They smell great (if you like that sort of thing), but the stronger they smell, the worse they are, IME. Also - less is best, re cleaning products generally.

Windolene - just the smell starts me sneezing, and if I get it on my hands it really irritates. Foul stuff. Air fresheners ans spay polish - just no. Too many chemicals to set me off sneezing. I wet dust, using a bowl of hot water to keep rinsing and wringing out the cloth, and buff TV screen/mirrors dry with a clean dry cloth.

I feel you. Others above are right about seeing paeds dermatology. Push for a referral.

Mine shower only with dermol, great for the hair too though it doesn't foam. Pat dry and more emmolients straight after. Several times a day with steroids when flares.

Aveeno cream (not lotion) works best when it's bad but when skin intact cerave cream is fine. Cerave seem to sting if the skin is broken. At its worst I had taken to applying Aveeno almost hourly to the bad bits!

Steroids hard and early, higher strength (we use fluticasone) early on means using doe shorter periods of time.

We also use cetirizine for the itching.

Thanks everyone.
Had a good chat with the gp today. He's been prescribed a stronger steroid and various oilatum products as well as hydrocortisone for his more delicate areas. I think I have to do this for 2 weeks, see how we go and only if I keep going back regularly enough will they refer me on. I'm ok to play that game for a bit.

Spoke to the teacher, who admitted they remember to cream at lunchtime 'most days' but they'll try harder. I told her to set an alarm like the last teacher did.

I've bought fairy detergent and have cleaned his room and washed everything he'll touch for the next few days.

I've just got to pull my socks up, do the right things and not let it drop I think.

You all provided a lot of info, so I'll go back over it and pick some more actions too.

Thanks again.