sleep disturbance because of severe eczema

[bellas]

ds is 6 and has slept through the night twice since birth. His eczema has improved slightly but his sleep disturbance remains horrendous,last night he was awake from 12-4am,even with wet wraps. Seem to have tried everything, would love a natural sedative, chamomile tea doesn't work, neither does Piriton or Phenergan. How do I break this cycle? Am i the only person awake in the early hours,cursing flippant doctors and dermatoligists whilst trying to reassure a frustrated child?!!!!!!! Should i try cranial osteopathy? Is he too old? Is there anybody out there in a similar situation? To hear from you, would help enormously..

How awful! Poor all of you. I know nothing about excema so can't help much, just wanted to sympathise.

The cranial osteopath I took ds to seemed to think they can help pretty much everything. It certainly isn't going to make matters worse. They treat children of all ages so you could try. The General Council of Osteopaths should be able to give you details of people near to you but if you can, go by personal recommendation as well.

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You have all my sympathy - all of it - we went htrough this, but only for a year. I can't imagine doing it day in day out for 6. Assume you've tried all the lavendar oil/lavendar bags ideas. Also do any of the over the counter herbal sleep remedies (Kalms etc) apply to kids? My other suggestion for bad nights is Benelin nightime, but not recommended for long term use. I would have thought cranial osteopathy is worth a try (works better for sleep than eczema IMO and if you're in London there's a special one for kids) as are homeopaths. If the eczema is bad- and it sounds like it is - is there nothing the specialist can do. There's a little boy at my church who's always been covered and he's on some new trial at the moment - I know (from experience) what a pain it is when everyone has a new cure, but if you'd be interested I'll find out what it is cos he looks amazing at the moment and is transformed as a child.
PS the other person to try is Elena Schalburg who advertises on mumsnet (banner at top of page). She may have some advice. Last piece of advice - can someone give you a break and let you sleep occasionally - you need help as much as he does.
take care

poor poor you.
my daughter has under control ezcema, but when it was v bad we took her to a paed derm at Gt Ormond Street. He put her on various things (including tacrolimus which is wonderful and which I assume you have tried) but in conjunction with the creams for treating her ezcema he also put her on a night time sedative - vallergan. This is an antihistamine, but he said that antihists aren't really very effective for ezcema (as the itch isn't due to histamine) - the reason that he was giving it to her was to knock her out at night so that she didn't itch. This would have two effects - one, would give the ezcema a bit of a chance to heal without being scratched to pieces when she was awake and asleep and night, and secondly to ensure that she was getting a good night sleep, as he said that ezcema got worse with tiredness and stress and so ensuring she wasn't tired would also help dampen down the ezcema. Both of these explanations made sense to me, and the combination of the baths, emollients, tacrolimus, vallergan that he gave us put the ezcema completely under control and it has been manageable ever since (a year later).

Best of luck with it all, it sounds like you have had a complete nightmare with the ezcema (and your poor ds). If it helps at all I'll give you the name of this derm - having been to multiple doctors/allergists/derms finding him was wonderful. Everything he said was like a light going on in my head and she responded amazingly well to his treatments.

hth

have u tried special sleepsuits? i also have been advised to wrap my daughter in clingfilm by her consultant at hertford general. the creams are applied after her bath, (i add a handful of salt to the bathwater as well as her oilatum ), pat her dry (dont rub), apply hydrocrtisone/efcortrlam/fuciden H/fucibet (depends on current perscription and only for a max of 7 days usually, depending in state of the skin and if an infection is present), then a layer of dermol 500 lotion, then aquaous cream, then finally a layer of emulysifying ointment. the wrap her arms and legs in clingfilm. pop on her mitten sleepsuit and off to bed.
its very hard trying to get a decent nights sleep with a child who has severe ezcema. my dd1 has had ezcema since she was 6 weeks old, she is now 3 1/2, its only since i saw the consultant on the 12th of june, and he recommended the above routine that i have actually been able to sleep all night most nights.
i also place a bowl of water near the window to keep the air a bit moist, hoover and dust every day if possible, keep her away from known culprits of ezcema flare ups, ie cats, avoid all perfumed washing powders etc, and make sure she doesnt eat yogurts or wheaty cereals as they also make her itchy.

you probably do most of the above anyway. have u got wooden flooring and blinds instead of curtains? dust mites can really aggrevate ezcema as well as asthma, and to get rid of dust traps is a good way to try and minalise the outbreaks.

hope i was of some help to you and not just waffling on lol.

dee

thanks so much for you helpful and kind messages. Has anybody tried the products from Elena's Collection - I'm wary as I have tried a few things which claim to be natural, cost a lot then make ds scream when applied. I'm unsure about tacrilimus as the nurses and my GP are hesistant to prescribe - were very negative, too. We have chosen the natural route after years of steriods, etc and doctors have advised us to stop using them. ds copes brilliantly - he's a complete star. We want him to have a normal childhood in the sense that he goes swimming, goes to parties and eats what he wants,and goes to school without bandages because he absolutely hates them and kicks me and screams when I put them on at night time. In other words,I could insist on steroid creams under bandages for school, restrict his social activity, keep him on antibiotics but I know this would make him so unhappy. His eczema isn't so visibly bad at present, but i think he's developed a really bad sleep-wake-sleep cycle which is ever present whether he has a flare up or not. Now,I'm rambling - it's so good to read your messages, thank you so much

Bellas, we had the first 18 months without a proper sleep due to ds very severe eczema. As PrincessP says, Vallergen is worth a try (there is an extra strong Vallergan Forte aswell). We found it the most sleep-inducing of all the anti-histamines. We were fighting a losing battle until we were referred to Dr David Atherton at Great Ormond St. IMO he is the best in the country (hr has written books and in generally tohught of as the expert in paed derm). He sorted out ds eczema and it has been well-controlled since. Before seeing Dr Atherton we tried everything and still our son deteriorated, his eczema was totally out of control and we were helpless so we owe everything to the aforementioned Dr A. See if your gp will refer you, in fact, if I were you I'd insist on it.

Good luck, I know how terrible it is and have lots of sympathy.

Hi,

This is my first time on Mumsnet all the way from sunny South Africa. I have a 16mnth old little boy called Luke. Since March he has been waking up between 22h30 and 00h00 every night and refuses to go back to sleep in his bed. Out of pure desperation, I started taking him to our bed which of course was the worst thing to do. I have just started him on a course of Vallergan Forte and feel very guilty about "drugging" my child. Does anybody have any info regarding side effects etc. I really do feel like a bad mom as I am desperate and also pregnant.

Many sympathies, our ds is 4 and still climbs into bed with us every night around midnight - 2 am. When we were trying to conceive No2 we had to make the most of the few hours he spent in his own bed. It worked, I am 6 motnhs pregnant!

As for using medicine to help your son sleep, does he have eczema or any other reason for waking? If not, then I dont suppose vallergan is the ideal solution. I think the main long-term effect is that it will prevent a child from learning to sleep properly without it. I dont think it is actually addictive but obviously it would be better for you to help your son find a way to sleep through without the use of drugs. Do you have helath visitors who could give advice?