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08-07-2018, 19:29   #1
Love2print
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My eldest has had bad eczema since he was a baby with it just getting progressively worse. GPís werenít overly helpful, and it was only when my mother-in-law mentioned that he should see a specialist did I even know there was specialists. I assumed that the GPs were doing the best by him and would have referred him for extra treatments, etc if it was needed.

So about 6 months ago we saw a specialist for the first time she said it is really severe and tested him for dust-mite and hayfever. He came back allergic to both and even though she didnít test him she said because his reaction to dust-mites being so high it is likely that he is allergic to other airborne allergies (so no pets). She said most people who are allergic score around 15-20, my eldestís score was over a 100 Ė that puts him into the highest bracket.

I have started cleaning more regular than normal including damp dusting, getting rid of curtains. We canít afford to replace carpets yet or to put up roller blinds (they are the best because they are the easiest to keep clean). Also doing a lot more washing so will likely need a tumble dryer in the winter to keep up. Will need to get rid of the open shelving in rooms too but again this will have to wait.

Iím finding it hard work, exhausting at times to do the normal house work plus the extra cleaning. I suffered with PGP (Pelvic Girdle Pain) during both my pregnancies, my hips have never gone back to how there were and excessive walk/exercising and lifting heavy stuff causes pain in my hips. I have read of some people hovering twice a day - I just don't think I could manage that or have time. Really my eldest son should be out of the room whilst I hover and for 2 hours after - this isn't always easy.

He needs to have various creams on, anti-bacterial wash and takes tablets to help with his allergies. These have ruined several clothes, one cream was like Vaseline so everything got ďcloggedĒ up with this cream. Another we have had stains clothes/be sheets yellow.

He can often wake up during the night effecting both our and his sleep. When itís bad he will scratch and scratch, and we can be putting creams on throughout the night. We have just been prescribed wet wraps so Iím hoping this may help Ė these will need re-wetting during the night so they donít dry out though but as we havenít tried them yet I donít know how often this will need doing. He scratches until he bleeds which gets on his bed sheets, (comes into out bed when wakes up at night) our bed sheets and causes him to have skin infections - the battle with the skin infection has been going on for over a year. It started when a GP refused to give him steroid cream and every since then it just keeps coming back. Because of the dust mites and blood on sheets, bed sheets need regular washing. Also to try to stop an infection taking hold with dirty sheets.

The current heat is not helping, so we have bought a fan to try to keep him cool.

My parents have offered to buy a dehumidifier, dust-mites like dark humid areas. This also has an air purifier built in. Not sure how much it will help but buying a dehumidifier is one of the recommendations.

We hoping to somehow re-arrange the house, so he can have his own room. The specialist said to clear his room out so he now as the bunk bed and the 2 chest of drawers in his and his little brotherís room. The small bedroom is used because my husband works from home so were going to have to find somewhere else for him to go.

We were advised to purchase special dust-mite covers for his bed these were around £100 for the set. The problem is he keeps wetting the bed. He wears pull-ups but wets through, he has now done this for the 3rd night in a row. This means washing his normal bed covers, plus his special covers and waterproof mattress cover. Because I can only afford one set I have to get them all washed and dried in one day. Is there anyway the NHS would cover a second set? Iím guessing not because they wouldnít cover the first, but I donít know if anyone here knows anything about any sort of help? Sometimes he sleeps straight through until morning but other times he will wake up during the night and of course we canít replace his dust-mite covers as we have no spare set. In the morning it takes at least 2 loads of washing to clean all the sheets, more depending on what is wet. I donít work right now so I can do the washing during the day ready for that night. I soak the sheets in eucalyptus solution before washing too to kill off the dust-mites. If I was working I wouldnít be able to wash all his bed sheets before bedtime.

He is now 6, so Iím not sure if the NHS could help with his bed wetting? Iím sure I read somewhere that until there 7 or 8 they wonít do anything and if they do the first option will be to recommend I hire a bed wetting alarm from a local clinic if they have one or if not buy one. But this will have to wait until he is not sharing a room as it could wake up his little brother.

With him having eczema and being wet at night he can end up being sore too.

I donít expect the NHS/government to pay for everything but I'm wondering if there is any sort of help to pay for things, even if it is just a small amount to go towards another set of sheets?
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08-07-2018, 21:29   #2
drolnhoj
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We had to go to the children's hospital from about the age of 2 to 16 with our son. His eczema was infected with the cold sore virus so erputed regularly. You can apply for help but have to fill in a multi page form and get support from the medical profession. Normally you apply and get rejected, then you appeal and usually get some support. We got dissolusioned with the process so just bought the stuff ourselves (dust mite covers etc.). They don't make it easy. Hope things work out.
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09-07-2018, 07:22   #3
Love2print
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He seen the specialist at the children's hospital 3 times now and need to go back again (waiting for appointment time to come through). Not sure how long he will have to keep going back, I'm guessing at this point it may be a regular thing especially with the repeated skin infections and such a severe allergy.

I read some people claiming DLA for their child, is this what you are talking about or something else? I've looked at the DLA and I feel bad applying for that as all though he has extra needs I'm not sure they are that bad really.
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09-07-2018, 08:01   #4
Jomie
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AFAIK when people are wanting specific equipment from the NHS, a case has to be made and it goes before the Clinical Commissioning Group. You would therefore need to get your medical team on board with this request.

If your child has had the condition for more than six months you could apply for DLA but before you send for the forms, write a detailed diary of everything that you do for your child and the effect it has on your life, particularly the fact that you can no longer work due to the demands of looking after him. The forms will not have room for all this information so you should add it on separate sheets of paper. Keep a copy of everything you send.

Carefully look at the requirements for lower and medium rate DLA because if you can make a case for medium, and are awarded it you will be eligible for Carers Allowance. I am not sure but there may be grants for items like sheets but it may need other qualifying benefits and be means tested - you should research it to be sure.

It would also be helpful to join one of the organisations that specialize in this e.g. National Eczema Society. The Health Unlocked website has sections related to individual diseases and might be of use to you. Facebook groups can be useful but they can also be awful and increase stress levels even more.

Re the bed wetting - see your health visitor (gp surgery will give details) or school nursing service.

Last edited by Jomie; 09-07-2018 at 17:11.
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11-07-2018, 10:09   #5
Love2print
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Thank you. I'm going to start a diary. He has had it since he was a baby. He will need to go to the GP in a couple of weeks anyway to get some more cream so I will ask about the bed wetting (assuming we can get an appointment on the day, can't pre-book as they are full up).

Although I've read eczema can improve with age (usually when they get to adolescence) I suspect with him having such severe allergies I doubt it will go away completely.
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11-07-2018, 11:46   #6
Jomie
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It is clear from your opening post that your son has significant care needs, including night time care. These are over and above the care needs of an average six year old. Consider applying for DLA and let them decide whether he is eligible. You could ask the consultant for support. If you donít get it, appeal because a high percentage are then granted. DLA would enable you to provide him with his needs and hopefully improve his health.

Regarding funding for equipment, sometimes local charities are keen to help in such cases as this. Thinking of Round Table, Rotary etc. Donít be afraid or embarrassed to ask because raising funds to help others is what they are about. It might also be worth asking local blind companies if they would be willing to help in exchange for publicity. A carefully worded letter could be the best way forward with that.

Have you tried putting cotton gloves on him at night? Might be worth trying. Also keep his nails short and encourage him to use a nail brush as bacteria tends to be harboured under nails.

There seems to be an awful lot for you to do (and spend) to try and stabilise his condition. I hope that things improve for you.
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11-07-2018, 16:49   #7
Chez2
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Eczema can develop at any age if you are prone to it. I developed it when I was almost fifty! Mine turned out to be an allergic reaction so get him patch tested at the hospital, I've been tested twice recently for around 80 chemicals each time.


I was tested for chemicals but I have previously been tested against animals and dust mites etc.

Strip everything out of his room and have a s few soft furnishings in the house as possible. Get a good vacuum like a Dyson animal, that's what we have got. It doesn't send dust around the room as the air comes out.


All my bedding is anti allergy / anti dust mite. I buy inexpensive quilts and pillows and replace them annually. The pillow protectors and mattress protector are anti allergy, anti dust mite from dunelm. I vacuum every two or three days but have a hand held dyson if I see any small bits that need cleaning up.

I needed increasing strength steroids and ended up struggling even with the very potent ones. I have now changed all the toiletries and hand wash and can't use any 'regular' items. Its not cheap but it means my skin has healed and I rarely use steroids. I do have flare ups if I forget and use ordinary hand wash etc. I don't share towels with anyone and always carry my own hand cream and hand wash which are on prescription. I used to use Diprobase which perhaps is one of the creams you describe? I have now moved on the Aveno which is more easily absorbed.


I have been prescribed special plasters / dressings they usually put on wounds. These cover my skin and stop the itch scratch cycle. They allow my skin to heal and have cut down dramatically the amount of steroids I use.


I also have a cream prescribed for stubborn eczema and other dressings which can only be prescribed at the Hospital not by a GP. Feel free to pm me. I will give you the names of the items I have so you can suggest them to the Hospital or your GP. I can have them on repeat prescription but the hospital have to authorise it first.


Sunlight is also good for eczema. They can give you a course of UV treatment at the hospital.

I will also tell you the additive free items im using which don't dry my skin. If im having a flare up I use some of the products you can get from a local Sheffield company and Holland and Barrett

---------- Post added 11-07-2018 at 19:14 ----------

I've just read your posts again. Is your house too humid? Do you turn back the covers each morning and open all windows to ventilate the house?


What are you using to wash the sheets? That could be irritating his skin and causing or adding to the eczema. I wash mine weekly and finish with an antibacterial rinse then line dry. I sometimes wash the pillow cases mid week if I still have moisturising cream on my face cream and it gets on the pillows. I put socks and pyjamas on so cream doesn't get on the bed sheets. I tend to put cream on and let it absorb before going to bed but I realise your son may be lathered in a deep layer of cream. I would suggest getting the hospital to try another cream, some soak in better than others. You can also get ointment and lotion, some is more greasy but its usually all high paraffin content and flammable.

Last edited by Chez2; 11-07-2018 at 17:00. Reason: add extra info
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11-07-2018, 23:04   #8
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Using fairy non-bio washing powder helped my mate who has quite severe eczema. Aldi occasionally have cheap anti dustmite (or some such) sheets, I'm not sure that will help or not.

Alot of it is trial and error, what works for one person might not work for another. Change the non-steroid cream from time to time if you can. I don't whether it's a placebo effect or what but a change in cream from time to time helps a bit apparently. I'll pick her brain.

On the funding thing, have you thought about a go fund me page?People ask for money for the most trivial things yours most definitely isn't trivial.
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12-07-2018, 09:57   #9
Love2print
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Sorry if I miss something as there is a lot to respond to.

These are the covers which the specialist recommended: https://www.allergybestbuys.co.uk/pr...le-bedding-set

She said they must be the sort of covers which encase the mattress, duvet etc. The topper style ones, which are a lot cheaper, are no good unfortunately.

We use Asda non-bio gel. To fair we never noticed a difference with clothing/washing powder/diet. Never saw a pattern to flair-ups. The specialist said that because we have never noticed any sort of pattern it might be a dust-mite allergy - so she wasn't surprised when our eldest came back positive. Although she was surprised about how high the result was. A severe allergy is classed as 17.5 on the scale, going from 0 (no allergy) upwards. So a score of over a 100 is really, really severe. I think if it wasn't so bad we could get away with cheaper anti-allergy covers.

Your skin can get used to the creams so that they become less effective, he's had several over the last 6 months so I don't think that is an issue.

He is using fuibit (not sure how that is spelt) currently and for another week. Then he is to drop down to eumovate once a day for a week and down to 2/3 times a week after that. He is currently using oilatum. The really greasy one is is no longer using I think that was zeroderm. He has used zerobase, diprobase, E45 in the past. Once he is down to the eumovate we will be doing the wet wrapping. We will need to but the eumovate on in the morning, because you can't put that on before wet wrapping. So wet wrapping after coating him in oilatum.

The yellow staining one is Trimovate, but he has stopped using that for now. He has had a couple of different cream for around his eyes. And he takes a tablet, begins with M, which is normally given to asthma suffers this is to calm down his allergic reaction.

The only thing left his in room is the bunk bed and two chest of drawers. The problem is I can't fit anything more into the little bedroom. Which is why I'm going to try to give him the box room and just but a bed in there. For now this is proving difficult as I'm trying to rearrange the house to find room for my husband to have a home office (needs this for work).

I bought a new vacuum last year (Bosch with no hepa filter - I didn't know back then he had a dustmite allergy) but luckily I kept the old Dyson, it must be over 10 years old now but still working.

He has anti-bacterial shower-wash he uses and oilatum bath ointment (or whatever it is called - there is just too many to remember) doesn't use soap, etc.

We had to have a major cull of soft-toys. It is possible to wash them on high heat, freeze them or dry on a high heat in a tumble dryer. But there was just too many for me to keep clean all the time - of course lots of tears ensued because as a 6 year he couldn't understand why I was getting rid of his toys.

He is becoming increasing fed up with the routine of creams - refusing to let me put it on and getting upset because his little brother doesn't have eczema and "it's not fair". He is getting more and more upset about his eczema and I find it's hard to explain it to him.
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12-07-2018, 16:22   #10
Chez2
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A quick reply as I'm working at the moment.

My pillow protectors have some sort of plastic liner with a zip and there is another flap which covers the zip. My pillow is an anti allergy one too.

The mattress cover is an allergy one and it covers the top and sides and tucks under the bottom a bit so its not just a topper to protect the top surface.


Oilatum doesn't sound strong enough for me, especially if he needs wrapping. It wasn't strong enough for me and mine wasn't all over my body. I felt diprobase was more moisturising but as I said, Ive gone over to Aveno as its more readily absorbed. My hands were so bad I had to wear disposable nitrile gloves with cream inside most of the day. This made my nails go to mush and tear.


Ive had steroid impregnated dressings. They were nothing short of miraculous. I had thick scars on my feet that made putting my shoes on really painful, that's where I had my allergic reaction, trace residues from a new pair of shoes. Within 36 hours the thick scars had shrunk and gone paler. Eighteen months of strong steroids hadn't worked but this tape had. Im told its £50 for a few cm, hence rarely given out. Ive also got some other cream as the very potent steroids didn't work and they were so strong they could only be used for a week at a time. The wound dressing also helped.


Your son may get a little respite of he can heal in the first instance. I realise he may still have flare ups if he comes in to contact with dust mites.

---------- Post added 12-07-2018 at 16:46 ----------

Im back.....

Ask about trying DuoDERM extra thin dressings. These have helped me to heal and stop me from scratching my skin when im asleep. Before I used this I woke up every few hours to put on more cream and my cotton gloves and socks. Theses dressings stick straight on your skin so keep in moisture of your skin and cover broken skin. They are impregnated with silver to control infection but don't have any steroid in or anything. These helped me significantly.


My regular steroid was 0.05 % active constituent but I could have only 0.1% on a flare up, not on a repeat as it can only be used for a week.


The steroid tape that helps with scarring was called healan tape but its Fludroxyccortide 4 microgams/square cm tape. You only get 7.5 cx 20cm as its expensive. GP can't prescribe this, Hospital has to.


For stubborn eczema you can use Protopic 0.1% ointment. Its twice a day for a while then just twice a week. I have to keep treated sun out of sunlight after using this. The hospital can prescribe this.

I wash with dermol. I found Oilatum a waste of time, its too weak for me.

You could suggest these items to your GP or dermatologist. Once hes healed it might me more manageable, Im not saying eradicated.

Last edited by Chez2; 12-07-2018 at 16:23. Reason: typo
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13-07-2018, 12:18   #11
Annie Bynnol
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Quote:
Originally Posted by Love2print View Post
He seen the specialist at the children's hospital 3 times now and need to go back again (waiting for appointment time to come through). Not sure how long he will have to keep going back, I'm guessing at this point it may be a regular thing especially with the repeated skin infections and such a severe allergy.

I read some people claiming DLA for their child, is this what you are talking about or something else? I've looked at the DLA and I feel bad applying for that as all though he has extra needs I'm not sure they are that bad really.
Please do not hesitate to apply for DLA and appeal if required to, the help is for your child. If it helps to reduce your stress, it's good for your child too.

All the help you get now will be paid back in spades in the future through taxes on both of your earnings and spending. This is how we help each other in this country.
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13-07-2018, 13:30   #12
Chez2
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You may get discharged once his skin isn’t as bad. I was discharged before my skin had healed once they told me what I was allergic to. I had to be referred back less than a year later when medication wasn’t completely working. I had more tests but all came back negative so they changed my medication and gave me a six month open appointment. If you can keep him away from the allergens and his skin heals enough to be managed easily they may discharge him. If they do, ask for an open appointment so you can go back without going through the referral process. I know the can’t or are reluctant to give children the high doses of steroids they give to adults. I really feel for you both, I know how difficult it is.
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14-07-2018, 20:16   #13
Love2print
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He just had an appointment letter through and he will be going back in October. She also sent a separate letter to both us and his GP outlining his condition and treatments, in which she says that she may suggest paste bandages if they wet wrapping doesn't help. It also mentions the tablets he has which is Montelukast, she has said in the letter that it is ongoing so hopefully we won't have issues with being re-prescribed it.

She prescribed Oilatum as the other stuff is too thick and blocks the pores. She said that the GP had made is worse by prescribing Zeroderm. It is related to the type of eczema he has - his eczema although dry is some patches is more blotchy generally. Not the dry/cracked type of eczema.

The covers we have for his bed zip up, the entire mattress is encased and doesn't tuck in. Same with the duvet cover - it is basically a bag with a zip that the duvet goes inside.

I'm getting rid of more and more stuff, like opening shelving where I can. I hope once I have got rid of the majority of the "dust traps" like ornaments, then combined with the damp dusting, special covers and other measures I'm hoping he eczema will calm down. I know it will never end in the sense that you can't eradicate dust-mites completely. The only thing to do is to keep on top of them but I hope that as we get the house less cluttered it will get easier.

I will apply for the DLA for him. At the moment because he is on the strong medication he's not been waking through the night, but after Monday we need to go down the Eumovate for 7 days and then after Eumovate 2-3 days a week. It is highly likely that once we do that it will be back to the night wakings unless the wet wrapping works (I really hope they do!). I'm going to keep writing a diary over the next few weeks and write down how many times at night he gets up and how long it takes to settle him down. I've never timed it in the past but it felt like we were up for a couple of hours each night. Simply because once he woke up itching he could not get back to sleep because of the itching and there is nothing we can could do to stop it itching. Several times we would just had to leave him and tell him to just try to go back to sleep because we needed sleep too.
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14-07-2018, 21:32   #14
Chez2
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The covers in the link I gave you zip up totally. There is also a special sleeping bag with built in pillow to take if you have to stay away from home.

Not all those creams are thick and block pores. Diprobase is for raw skin to protect until it heals. Some of the moisturizers stop the itching. I have dry skin excema and allergic eczema
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14-07-2018, 22:35   #15
Love2print
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I couldn't see a link but the ones at Dunelm say dust-mite resistant. They don't appear to be the barrier type ones which is what he needs. The ones he need seal dust-mites in so that he can't breathe in their feces. They are made from a very tight-knit fabric which is what keeps them in because they can't escape. If they have ones which are dust-mite proof then I will take a look.
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14-07-2018, 23:22   #16
smithy266
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Did you receive my pm?
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16-07-2018, 16:21   #17
Chez2
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Quote:
Originally Posted by Love2print View Post
I couldn't see a link but the ones at Dunelm say dust-mite resistant. They don't appear to be the barrier type ones which is what he needs. The ones he need seal dust-mites in so that he can't breathe in their feces. They are made from a very tight-knit fabric which is what keeps them in because they can't escape. If they have ones which are dust-mite proof then I will take a look.
Sorry, it seems the link didn't add. I will look for the company again and try and add it. I was working on two browsers. I need to change my password (can't remember it, Im on auto log in) so I can use an up to date browser for the forum. I just Googled it so have a quick look. The second company, not the Dunelm one, does have totally zip up covers cheaper than the ones you added in your link.
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