Allergies - feeling blue - sorry long

[bobthebaby]

My ds is bright red with eczema again, and its got me down. He is nearly eight months and has had eczema since his hormone rash went away at 6 weeeks.
I knew he had a really strong chance of getting it, so I exclusively breastfed him for 6 months before introducing solids. Then I was very careful about what I gave him. No wheat, no milk, no citrus, no tomatoes, no eggs, no nuts. Then I saw a specialist who told me to give up all the things that he reacted to at the skin prick tests. So no milk, eggs or peanuts for me either. But other things make him flare up too - banana, potato and carrots for him, artificial colourings and tomatoes in my food. Baby rice and avocado make him projectile vomit. All the things that make his outside sore make his insides sore too and he lies there writhing in agony. He doesn't even cuddle me anymore just uses me as a scratching post.
A trip to a house with a cat or feeding him a new food means a whole week with virtually no sleep for all 3 of us. He needs 2 baths a day and more when the weather is hot or dry (I live in a place with very little rain fall)I smear him with disgusting smelling ointments several times a day as he screams the house down and tugs and tears at himself. I don't feel I can leave him with anyone else, because nobody else realises the effect that not putting on a cream or not changing a nappy or having him in too many clothes has on the rest of my week.
Most days I love being his mum, but some days I just wish I didn't have to face it, and maybe on those days I am not so good about his baths and creams and then he gets worse and I feel guilty. Probiotics and Flax seed oil are really helping as is my exclusion diet, but one wrong move with the food and we are just back to square one. It would all be easier if I had more energy (lethargy probably caused by strict diet and 8 months of virtually no sleep).

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Have you tried wet wrapping? Made a huge difference to us. My personal view is that it is the only thing that really soothes severe eczema. Remember that this may well not be for ever- when ds1 was 12 months people used to scream when we took him out (literally as in "agh what happened to him - has he been scalded?" ) Now he's 4- for the last 6 months he has been totally free of eczema- he currently has a tiny tiny patch on his tummy.

Go for wet wrapping though becuase then you can leave him with someone and know he's being moisturised and isn't going to be itching. Wet wrapping will transform your life I promise (and when they comeout his skin their skin is so beautifully soft and lovely). Some places say you can't wet wrap for long periods as you have to use steroids- bollards- I wet wrapped for ages just using emollients as ds1 found it so soothing (and therefore slept!)

At the time of ds1's severe eczema I joined an email list which I found very helpful. If you want I can scroll back through ym emails and see if I can find its details (may take a while though).

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Podmog - I read your message and everything you said, I was just nodding in agreement. I do feel very alone and its great that I can at least have cyber friends who have had the same things happen to them. At the moment its always the first thing that people ask "how is ds's skin?" The poor little chap is defined by his skin. He waved bye bye to his dad for the first time yesterday but that gets lost in conversations about his skin and sleep. I am thinking of asking everyone just to stop asking me about it - especially as he will soon be old enough to understand that he is being talked about. What do you think? Am I going to leave myself completely without support?
JimJams, wet wrapping sounds really interesting. Are all the bandages available on prescription in the UK? I tried to get my NZ GP to prescribe Diprobase today for washing as we used it successfully in the UK and wouldn't you know it - they don't have it here.

bobthebaby - just wanted to send my sympathies - eczema is the most terrible thing to battle with and one of the biggest problems is other people's comments. I had awful eczema as a child - I was hospitalized with infected eczema at one point - and had to put up with all sorts of idiotic comments including a dinner lady at my primary school telling me I shouldn't be in school with a contagious skin rash, and other kids commenting and staring. If it's any hope my skin is now very well under control and most of the time you wouldn't even notice my eczema. For the vast majority of people the eczema does diminish as they get older even if it doesn't disappear completely. And your son will learn to help out with his treatment when he's bigger.

Like Jimjams I really recommend wet-wrapping - it wasn't around when I was little, but all the reports I've read say it's really useful. And take a look at The Eczema Society . I find diprobase excellent - I use it along with aqueous cream as a moisturiser and for washing. I'm sure your GP will be able to find an equivalent - and if you don't get any joy ask to be referred to a specialist. As a child I had monthly appointments at hospital where they tried all sorts of different treatments which my GP could never have organised for me.

Meanwhile, try and focus on the good things - like you say your ds will do all the great things other babies do at this age. And is there anyone you could ask to take him just for a short time to give you a break? Maybe a relative who you could trust to do all the creaming and dressing him appropriately? Just one night's sleep can make such a difference to your ability to cope.

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Bobthebaby, I'd be willing to buy and post diprobase to you in NZ if you sent the money ? Obviously the ideal thing would be for your GP to prescribe something similar and available in NZ, but the option is there for you. Please contact me via MN if you want to proceed.

WSM
xx

Hello again. Thank you for your kind words and offers. My dad is going to bring me some diprobase over next month, and I will look into getting my friendly pharmacist to make something similar up in the meantime.

bobthebaby- we did indeed get the bandages on prescription- they're called tubifast. Aparently you can get little wet wrap suits now (I haven;t done it for a couple of years) not sure where from but you could try posting in SN or healtha and asking there.

Another good cream we found was 50:50 50% vaseline in white soft parrafin or something- very gloopy- but very good under wet wraps.

We used diprobase as well.

Bobthebaby, I have so much sympathy for you and your family. For 18 months our lives were ruled by our son's eczema. He scratched all day long, from morning till night. I coulndt feed him, play with him, read to him or do any of the activities I wanted to do because all he could do was scratch. There were days I screamed and days when I rang dh and told him to come home immediately before I went mad. The isolation was awful, friends from antenatal would go to baby swim sessions or to cafes but we had to miss out, I think alot of people felt very uneasy in our company and I can see why. We also put up with stupid, ignorant comments on a daily basis. I remember my heart broke one day when a girl came up to me and said "your baby's disgusting". To me he wasnt disgusting, he was/is the most beautiful thing in the world but at that point I realised many people would never see past his skin condition. Take heart, things improve. We were referred to Gt Ormond St (wet-wrapping provided some relief but not a long-term one) where we saw Dr Atherton. He said that our son's skin would never improve with creams alone and prescribed steroid tablets (prednisolone) which ds took for a year in gradually decreasing amounts. They worked like magic and his skin, although still sensitive, is virtually eczema-free. I could never have hoped for this in my wildest dreams but we found a way to control it and so will you. It is trial and error but do keep trying and you will find a solution. Please come here for support, there are lots of us who have been through the same. Lastly, dont add to your misery by feeling guilty, it is natural to despair sometimes and even to resent your child, I know I did. You are a wonderful mother and your son is lucky to have you.

Dr Atherton's book is well worth getting as well- its very good.

Bobthebaby - just wanted to let you know that I think your DS is so, so lucky to have such a really outstanding mummy. You have done everything possible to try and give him the best chances of fighting his eczema. I admire you so much for the huge sacrifices you have made for him over the last 8 months, and for all the patience and tender loving care you have given him. I think my own mum is the best in the world, because she would do anything for me, and she has made sacrifices all her life for me. Your DS is going to grow up and feel the same way about you.
Really hope things get better soon.

Dinosaur, we used Chinese medicine for ds, it didnt work but I have a friend whos son's eczema was virtually cured by it. However, the herbs are not only applied to the skin, some are ingested. Ds had a foul smelling brew to drink (generously laced with Ribena, it was truly foul) and one to use in the bath and to soak his wet-wraps in. The practitioner we used has an excellent reputation(Gt Ormond St refer to her and Dr Atherton has done lots of research with her) so we were confident that her medicines would not harm ds. Unfortunately there are many charlatans out there who put a number of substances (ie steroids) into the herbs which can cause harm. We were advised by our GP that ds should have a liver count before and during treatment.

Sorry, bit rambly but just wanted to point out chinese medicine is usually taken internally.

Thanks again for the suggestions and support. MichelleM I has a little tear when I read your message - so thanks.

Today I felt a lot better - buoyed up by Mumsnetters. His skin was still awful but he was in a great mood and so I took loads of photos of him. Usually I only take them if his skin is good or we are out somewhere. Then I put one as our wallpaper on the computer. It was really hot here today so I treated him to a big deep bath, rather than a quick in and out in the baby bath. I sang songs and he got to splash a lot and giggle. It was worth having to clean the bath for. Thanks again.

That's exactly it Dinosaur, you must find a reputable practitioner. Every High St seems to have a Chinese Medicine place but I dont know how reputable they are.

Bobthebaby, your day sounds lovely. I always feel we go the extra mile to make things special for our children, they have far too much to cope with so young and finding small pleasures are just wonderful.

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Feel better today. I got the doctor to prescribe all the free stuff (in NZ a lot of the better, more modern stuff is only partly funded)so we could try it. I have an emulsifying wax, white soft parrafin, liquid parafin mixture that feels nice in the bath on cooler days, so I can eke out the diprobase until next month. I have also found out that there is a benefit for children that require more care than usual, and I have an interview with them next week. Doing practical stuff always makes me feel better - more in control even if its out of control iyswim.

as u all probably know by now, my dd1 has severe ezcema, and has had it since she was born. i have hardly had a full nights sleeps since. people always ask about her skin and say 'awww doesnt she look better today' i just nod along. as long as her legs are covered up they cant see how bad it is. her facial eczema cleared up when she was about 1.5 years old. she still has patches on her knees, (back and front) feet, back, tummy, elbows (inside and out), and has what i call old lady hands. i take her swimming on good days, even tho a holiday camp we use say not to use the pool if u have eczema i always stick two fingers up at the signs and take her anyway.
i keep her away from cats (got rid of mine when she was aboutm 6months old) she knows not to touch them, used to say 'yukky cats' lol. no bubbles in her bath, minimal soap powder (if i could get away with using none i would) wash everything at 60degrees, bedding changed regularly, all clothes cotton, probably all the things i already now. sugar can set off some kids ezcema, and i always find an anti-histimine helps on bad days. not sure what u could use for your wee son as he is only young.
carry a clean cloth with u, if he had an itch wet it with cool water and hold it on the itch (my dd1 has sat on the sofa before now with damp towels wrapped round her legs cooling the itch away).
i actually gave up my job as my dd1 required so much care, and my parents looked after her one afternoon a week, she used to scare my dad with howmuch scratching she did. i remember one day i called up work to say i wouldnt be in, they were pretty snotty with me, so i went in with my dd1 sat her on the desk and said 'this is why i'm not coming in' she was covered head to toe in terrible eczema. they looked shocked and didnt mind me having the time off. the doc offered to sign me off work because of my dd1 eczema as well. its an endless cycle of creams, baths, watching for allergic reactions and constant care. i wish i could tell u it does get better as every one likes to tell me that kids do grow pout of it, but some dont. i hope my dd1 will grow out of it, but i know that as her dd hasnt then she possibly wont either.
it becomes part of your life, and some how i have learnt to cope on interrupted sleep, the stares, the weekly trip to the pharmacy to pick up medication (usual atm is dermol 500, oilatum bath pil, aqueous cream, emulsifying ointment, emovate for bad patches and her inhalors) plus a trip to the supermarket for clingfilm as well.
i'm wishing u all the best for finding a way to keep it under control, atm dd1's eczema is under control, but its a lot of hard work.

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Misdee, your baby is so lucky to have a devote and competent Mum. There is a beleive (Hindu I think) that children choose their parents before they are born. This thought used to comfort me, the fact that maybe my son chose me because I could look after his very special needs.

sorry, a belief