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Original poster

Eczema...advice sought plse!

94 replies

marz · 07/01/2004 13:25

I have 2 dd's with eczema, dd2 is currently only under control??!! with hydrocortisone and diprobase while we wait for referral to Royal Free, (where dd1 is , who has Protopic)
Questions....
How do I get the diprobase ointment out of dd2's clothes? I use Persil non bio and even on 60 degrees it is still everywhere. Have tried soda crystals and 60 deg. which works better but still not completely non greasy.....also are soda crystals safe for her already bad skin??
Then....can anyone please explain wet wraps....this is probably the only thing we never tried (or were offered) for dd1 so I wonder if it is worth a try for dd2 (5 months)..thing os, her eczema is all over body...can I wrap her whole body??!! ( Just want to be more informed when I get to hospital appt...and then can ask for what I want instead of being soley in their rather incapable hands.....am consideing asking for referral to GOS ...have just joined NES too....my eczema on my hands is so bad now...(due to stress...it got really bad with dd1 until we got her under some sort of control.
Sorry for the ramble...I am just pretty desperate and fed up and so so tired too...need some sympathy too I guess!
thanks in advance......

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princesspeahead · 10/01/2004 12:21

oh brilliant marz, I hope so. if you are, just go private. continuity of care and all that - you sound like you are being messed around a bit. if you need a private allergy specialist then Gideon Lack is your man, at the portland. Consultant allergist and immunologist. Lovely, gentle, and v well regarded (he is the guy who did that research showing a link between putting creams containing peanut oil on broken skin - eg eczema skin - and peanut allergies). If you want his or Harper's numbers contact me.
best of luck!
Best of luck!

robinw · 11/01/2004 04:27

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Original poster

marz · 12/01/2004 09:08

robinw....I will tell you the name of the probiotics tomorrow...hopefully, I forget the name but I am getting them tomorrow, they were out of stock at my health food shop...( remember the bottle but not the name....) they were only recommended by the shop...after I did nots of searching for dairy free on the internet etc. To be honest I have never read about fatty acids being given at the same time....
As for the allergy testing, when I challenged the consultant he decided not to retest for the peanut and said it would be better to wait...(as if it were his idea in the first place!) she is not being tested for anything else...as she had a comprehensive set of tests last year and he had not read the notes properly. (as is the case with lots of Dr's. No excuses....I think it is unacceptable no matter how busy they are.)
princesspeahead...thankyou for the recommendations...I think I may have to keep that in mind about the allergy specialist..I am really dreading having to start weaning dd2...not even sure how to start as I don't have much faith in my ability to express enough but am not wanting to start on trying her with formulas..the dairy I am worried about...the goats milk was the same, and then all the hypoallergenic ones, well, dd1 absolutely refused! So..we have one moneth more and I will have to take the bull by the horns I think!

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Original poster

marz · 13/01/2004 09:27

Dh has tried and I have tried to get hold of Dr Athertons' book...it is out of print. Does anyone have a copy that I may buy from them or know of anywhere that I could get hold of a copy? Dh has already called Dr Athertons office...waiting for a reply...
Thanks in advance!

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Original poster

marz · 13/01/2004 20:08

dh spoke to Dr Athertons sec. today..he is in process of writing an updated version....but he has none of the old one, and the new one is not out till the end of this year. Not a great help!

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bunny2 · 13/01/2004 21:09

Marz, have you tried the library? Our local one has 4 copies. If you cant get it, contact me and I'll send you my one, it's so worth a read.

Original poster

marz · 14/01/2004 09:40

bunny2,
yes..no joy from library..they say they have a copy but can't seem to be able to find it...
I would be really grateful if you could loan me yours....I am a quick reader!! Will contact you ...thankyou!

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robinw · 14/01/2004 10:00

message withdrawn

bunny2 · 14/01/2004 13:16

Ok Marz, contact me and I'll put it in the post. No need to rush it, keep it a while.

Original poster

marz · 14/01/2004 20:57

robinw...thankyou for that, I am getting dh to print for me tomorrow....oh.and the capsules I got were BioCare Bio-Acidophilus
Containing

Lactobacilus Acidophilus CLT60
Lactobacilus Acidophillus CUL21
Bifidobacterium bifidum CUL17
Bifidobacterium bifidum CUL20

Not sure whether it works to be honest, although I did take in my last month of pregnancy....(fat lot of good that was!!!) I am on antibiotics now though and it is partly because of that but also clutching at straws, for dd2 that I am taking again.....! Will start them next week but will def look into your post first now!

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Original poster

marz · 14/01/2004 20:59

bunny2,

have sent you an email.....thankyou!

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Chandra · 14/01/2004 21:16

I haven't had the time to read the whole thread so appologies if I am repeating something someboday has already said. DS has eczema but is now under control, he had a very bad summer covered with flares from head to toe, bleeding at the elbows, head, neck and back of the knees. The worst of it happened during a holiday week in Spain... the thing is that we ended seeing a dermatologist there and the problem cleared in 3 days. He prescribed Eucerin lotion (can be found in Boots), mometasoane (a corticoid), an antibiotic in syrup and Ucerax syrup to control the itching, but what I believe is making the diference is something called Emollytar that we use on the bath.

Before that treatment we have tried aqueous cream, hidrous cream, e45, lipikar baume, calendula cram and many other emollients that IMO didn't have any effect in DS case, Eucerin has been a revelation.
In the bath we used nothing, oilatum, balneum and diprobase, and again, nothing has worked as well as emollytar.
I'm not going to speak much about mometasoane because with the rest of the treatment we hardly used it.
With the exception of a problem area around his mouth he has been completely clear for almost 5 months, but we have noticed that if we stop applying Eucerin for a couple of days the skin becomes red and rough immediately. Mind you, it burns on cracked skin, but as the problem doesn't happen very often we just use Diprobase until the area is better and then go back to Eucerin. (the main difference is that when we were using diprobase we were applying it about 8-10 times a day, with Eucerin is only 2-3 a day).

Hope it is of any help

mckenzie · 14/01/2004 21:20

Marz et al

I personally have no experience of excema but it breaks my heart to hear your tales as I have a friend with a son who has suffered so badly over the last 2 and a half years.

Can I mention one other thing that another friend of mine tried? It might be more for minor cases but she found by switching to natural products throughout the whole house (bathing, washing, cleaning etc) her 2 sons were clear of their excema very quickly. I'd like to stress that I have only the one success story to report but I thought I should mention it. She used products called Neways but I think other companies make similar products too.

Lets hope that things improve for all of you.

Original poster

marz · 14/01/2004 21:50

Oh...another question....dd1 is on tacrolimus, stopped for the past 4 days (as she had been using for over a week and we like to try and stop...occasionally, she now has spots with white heads on over her legs where eczema is/was, has anyone ever seen this? I am just curious, we are going to get her seen too by Dr Atherton or Harper, (why do one without the other!!) we are covered by med insurance but would you beleive the excess of 100 quid is per person, (fair enough) but also runs from April to April.....so we will, /i sure, end up paying twice as I don't feel that we should wait....if that is the case I would wait for the referral from hospital!
Anyway...back to her eczema, I have not seen this b4, and dh thought maybe as we are allowing her skin to breathe...(are we?? We are using diprobase ointment) that the toxins are coming out? I don't know, but just wonder if it could be anything serious...??

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bunny2 · 15/01/2004 18:54

Marz, ds gets small red bumps on the outside of his right thigh. The spots can have white heads but they arent itchy. I find a mild steroid clears them up but they do mystify me a bit because they dont really resemble eczema.

Re your email, I think my totalise account is up the swanny. Can I contact you instead?

bunny2 · 15/01/2004 18:55

ps glad you're off to GOS, best money I have ever spent seeing Dr A.

Original poster

marz · 15/01/2004 20:18

bunny2....yes you may contact me.....thanks! I will ask whoever I see about these spots...very weird they are..but glad that it is not just dd1 now!

princesspeahead....tried to contact you about contact no's for consultant allergist/immunologist...you cannot be contacted...have been advised to tell you that you may want to update your member profile!
Anyway....please could you contact me ? Thanks!

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princesspeahead · 15/01/2004 20:29

just sent you an email through contact a talker marz

Original poster

marz · 15/01/2004 20:34

Thanks.....will wait..patiently!!!

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AussieSim · 16/01/2004 03:38

Chandra, What is in Eucerin? I will take my 11mth old to the Dermatologist tomorrow, but as I am in Germany I am not sure if that brand will be available here.

I am just back from 4 weeks in sunny Sydney but can report that the warm weather did not improve my ds's eczema and that the heat and air in the plane actually caused him to flare up.

I went to a healthfood store while I was there and they recommended Flaxseed Oil and Fish Oil for me as I am still breast feeding. I am not certain about the dose though and whether I need to take both. I tried speaking to a pharmacist while I was there but he was very skeptical - he didn't even think that they would pass into my milk, or that they would at least take a long time to build up in my body first. I actually thought I saw an improvement while I was there but it all went to hell on the trip back.

I'm using cortisone twice a day on ds at the moment but he has some really nasty patches that are infected and are not getting better. My dermatologist doesn't have much interest in the benefit of baths and would only recommend olive oil.

I am worried about strong treatments as I had a boyfriend once who was left sterile by the treatments he had for his skin when he was a boy.

I don't mean to hijack the thread, but the guilt is intense and I feel so helpless.

robinw · 16/01/2004 07:39

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robinw · 16/01/2004 07:48

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misdee · 16/01/2004 08:29

eucerin contains 5 or 10% urea. we use it after dd1 goes swimming, and when she is scaley as opposed to patchy. i find it leaves me hands feeling odd, but her skin is softer with it. i try not to use it too much tho as she did have reactions to it when it was 1st perscribed to her, but they have got less over the last 2 years and the occasional application doesnt seem to cause prolems anymore.

the spots, coulld they be an infection at all? dd1 gets pus filled spots at times when she is infected, but these usually have a small green head on them (lovely).

Original poster

marz · 16/01/2004 08:48

robinw
I have read about the active strains etc. Typing with one hand....and that is why I only buy capsules that are ALWAYS refrigerated, not just once opened as there is more chance of them still being "alive"!! However...even that is not a guarantee....I guess! Hate to think about how much money I am wasting otherwise!!!

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Original poster

marz · 16/01/2004 08:52

robinw
by the way...can you get it from the hospital?? (or do you mean if you were part of a study/research etc?)

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