How much do you trust doctors advice?

[AussieSim]

I got a new script for my DS's eczema yesterday from a new dermatologist. I picked it up from the chemist, applied the cream as he had instructed and put DS to bed and later came to the computer to do a bit of research on the cream (even though my last 2 dermatologist have told me I shouldn't) and to translate the leaflet in the box.

It turns out that both the information that came with the cream plus info on the web (FDA etc) says that the cream shouldn't be used on babies DS's age, or on his face, or on the nappy area etc etc. The doctor specifically told me - in english - that tests had been conducted on babies half DS's age, with no side effects.

I want to trust the doctor and am feeling a little bit desperate to 'fix' my DS, but can he really know better than the company that produces it or organisations that approve the use of drugs?

What country was the information from. Very often different countries give differing ages, because the product is licensed for use on children from say age 2. A case in point is infant paracetamol in NZ, where it gives doses for 3-6months and 6-12 months and then at the bottom says "not to be used in babies under 2 years". Huh? In the USA Zyrtec is licenced for infants but my chemist looked in horror when I said I intended to give it to 9 month old ds, because the packet says from 2 years. I pointed out paracetamol says exactly the same thing and people give it to babies after their 6 week jabs.

I can only presume that nobody wants to be sued. I always think it a bit dubious when doctors say it has been tested though and then you can't find the test on the net. Presumably he means he has tested it on his patients!

Out of interest what was the cream? Maybe someone else here has used it.

Bob, the information in the packet is german and the information I have looked at on the net so far is from the USA. In Aust/NZ the cream is called Elocon. I don't think it is in the UK from what I can tell. Here in Germany it is called Ecural. The active ingredient is called Mometason. My DS has just turned 1. Thanks for your post.

I found this about the cream on the NZ Medsafe website.

"Babies and children up to four years should not be treated with topical steroids for longer than three weeks. In infants the napkin may act as an occlusive dressing and increase absorption."

This is the word of the NZ Govt agency - which I presume you have read. The point about the nappy is a good one, if you have to use it down there then I suppose a good airing of the bum before putting on the nappy again could be a good idea.

I did try German sites with autotranslate and found a very funny one from "tommy" who has "lichen" on his "acorn". It's all a bit "allo, allo" for me. He appears to be applying it to his acorn more often than every two weeks. Now, is an acorn more sensitive than a baby's face? Poor Tommy.

I can't comment on the specifics of the steroid because I don't know enough about it. But I do know a bit about the lack of licence for a specific use.

I used to work for a couple of drugs companies. I was surprised to find out that a doctor can prescribe anything for a patient, but the responsibility for the safety of the drug/treatment then stops on the doctor. There were a number of drugs that were used 'off licence', so they had a licence for one use but were used for other conditions because the doctors knew that they would work and the drugs were 'safe'. So , for example a drug that was licenced for use in depression was also used off licence as a pain killer.

Many many drugs are not licenced for use in children.

The problems with steroid use are from it's skin thinning side effects. That depends, I think on the potency and duration of use.

Hmmmm We had this - for severe eczema when ds2 was 11 months. He was prescribed a bunch of stuff which wasn't licenced for his age. Trouble was he was in a very bad way.

One steroid we were prescribed was propaderm 1 in 10. (a strong steroid diluted in petroleum jelly) This is used a lot at GOSH apparently. We used is sparingly, for the shortest period possible and tapered (hope they explained the importance of tapering to come off steroids- if you just stop you will get a flare up).

Did ds1 have any lasting problems form the drugs he was given? Um yes to be honest- although probably the antibiotics/ or possibly antivirals more than the steroids. Could the doctors have done anything differently? Not really- probably one of the antibiotics he was given could have been avoided but I'm not sure that would have made any difference. And he was in a bad bad way- eczema herpeticum can be fatal so they had to do something! Could I have done anything different? Certainly I could have give probiotics for a start.

Doctors do have a very narrow point of reference. If your child needs the steroid then use it (is your child's eczema severe? If not something like hydrocortisone should be fine), but sparingly and taper asap. Have you been given any inof on wet wrapping? It increases the absorbance of steroid into the skin, but it very effective at getting severe eczema under control

Jimjams, can you explain tapering a bit - I just take the frequency down from twice a day to once to every 36 hours then stop - is this the same?

My dd had elocon cream prescribed at around 10 months but my GP said only to use it on her body and her hands which were particularly bad. I felt worried about that as she puts her hands in her mouth so much but GP said it is absorbed v. quickly. She said not to use it on dd's face as it has too many skin thinning effects and gave her a different cream called 'fucidin' for her face that has apparently a v. low steroid content and some antibiotic too (dd's face was really very raw and sore at this time) but I could only use it for 2 weeks. Fortunately this worked and her face cleared and every time it flares up I use the fucidin. I only use the elocon on the v. sore patches that come up and as soon as they seem better I leave it off. Also I try to only use any of the creams once a day.

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I called the doctor this morning and explained my concerns. She said, if I was worried I should use it twice a day for four days and then the balance of the 3weeks once per day. She said it was nonsense about not being able to use it on the face, and she said that when I apply it to his bum I could leave the nappy off for a while. I asked for how long and she said 2 hours, but I think she was just pulling a figure out of the air and has obviously not cleaned up a nappiless little boy over a 2 hour period. I left it off for about 40 mins this morning after applying. She said if I just used cotton gloves on his hands that it should still be able to breath.

JimJams, it is good to hear that someone else on hear has used it, and yes his eczema has become severe over the last couple of weeks - previously just his cheek and thumbs.

Bob, Babelfish can give quite a bit of entertainment. Yesterday I read something about a face infected with mushrooms.

Meant to add HMB, that your explanation of the behaviour I found quite comforting.
Evita, we used Fucidin for 2 weeks with no improvement (in fact worsening). I've only applied this cream twice so far (v thinkly) and alread I am seeing improvements, but the doc didn't say anything about tapering and told me even if it improves I should keep it up for the full 3 weeks. What do you guys think?

I also added Yakult to my diet today, alongside the fish oil. I was surprised it tasted so nice - definitely too sweet to give DS directly I think - he is already getting a kick out of the antibiotics.

Thanks everyone

There's a paper here that talks about using this drug successfully. I can access the whole paper, but I don't think it's available freely. They study 40 patients, the youngest of whom is 1 year, so I guess your doctor is right that the drug has been studied in babies. This was just the first paper I found that was relevant, there are lots more. You wouldn't necessarily find the right information in general web searches, but if you try Pubmed there will be lots of primary data.

Forgot to add (in case anyone's remotely interested!), I think there are two types of fucidin. The usual stuff is non-steroidal, it's only fucidin H that has any steroid content.

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yep bob that's tapering. Although when we were coming off the strong stuff I had to taper to 1%HC then 0.5% HC before stopping.

The face stuff depends. the National Eczema Society says quite clearly in its bumpf that not using steroids when needed can be more damaging than using them. As long as you're sparing and use the minimum its fine.

Fucidin H contains HC- it's quite a mild steroid. We used it without problems for quite a long time (on the face). I think we used fucidin H rather than propaderm on the face, but my memory is a bit rusty.

I've put in on twice now and swear I can see it improving before my eyes

I used Elocon on my ds when he was about 10 months old for severe eczema. We applied it everywhere, including his face and nappy area. However, if it's the same Elocon that we have in the Uk it's a potent steroid and that's probably why you're seeing results.

I was told by the dermatologist that it could be used for up to 14 days continuously, but we were advised to use it for 4 days the first week, then 3 days the next week, then 2 days etc. I was also told by my GP that there was no evidence that applying a steroid twice a day was any better than once.

Unfortunately Elocon only worked for us on the days that we were using it, and in the end I said I didn't want to use it anymore because I was too worried about potential side effects. I think we used it for about 6 weeks altogether and there's been no damage to the skin on ds' face ( he's 2.5 now and for months I asked every dematologist I saw to check, just because I was so worried about it!)

We also had a nightmare cutting down from Elocon, to Propaderm 1 in 10 twice a day, then HC 1%, etc.

As for the info on the box, in the UK even the mildest steroid says not to use it on children under 7, or on the face or nappy area. I don't think any dermatologist takes any notice of that info.

One of the many things I wish I'd done in hindsight was to change the emollient we were using. I applied Epaderm, a really disgusting thick ointment, to ds 6 or 7 times each day and his skin just kept on getting worse. After we'd gone through the whole Elocon thing the dermatologist suggesting changing to "Double Base" and there was such an improvement within days. He still had eczema all over him but his skin was so much softer. I just wish that they'd suggested that before putting ds onto stronger and stronger steroids, so it might be worth discussing a change in emollients with your dermatologist too.

Hope your ds continues to improve.

I found different areas needed different emollients as well. His body was fine with diprobase, but hands needed 50:50

I totally agree with CER re. the emollient cream. We used 2 v. thick ones at first which were awful and did no good at all, then the pharmacist himself (who had had eczema all his life!) recommended I use one called 'cetraben' and it had such an amazing effect. I only use it once a day now but used to use it twice and it's only rarely that dd's skin erupts badly now.

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No one has told me to use emollients at all on DS's eczema. I'm not sure if it is different than other peoples or if they don't do that here in Germany.

CER worries me with the report that Elocon only works when applying it. Maybe that is why my Dr has said to apply it every day for 3 weeks - to really knock it on its head. What do you think?

I find that using emolients means that we keep the flareups to a minimum and so the use of steroids to a minimum as well. I had exczema when was a child and was never given emolients. To my mind they help in a big way. The trick seems to be to find and use the one that works best for your child. My two were helped by aqueous cream, but I know that this is hopeless for other people. We also found oilatum the best in the bath, others find that it makes things worse.

oh gosh emollients are an absolute must. The most important thing in controlling eczema. And for severe eczema I would say wet wrapping with emollients (and if appropriate with steroids) is essential as well.

Definately agree with jimjams and hmb. Applying emollients is the most important thing with eczema, and putting some sort of oil in the bath so that the water doesn't dry your ds' skin out.

I would get back to the dermatologist and ask about that. I prefer to use emollients that aren't parrafin based now, although it means that I can't get them on prescription.

Every child's response to emollients and steroids seems to be so different that just because Elocon didn't work for us long term doesn't mean it won't work for you. I think all ds' food allergies and intolerances were a contributing factor, and he also seems to react to a lot of things in his environment, so nothing was going to work until those were addressed.

Likewise, just because something did work for others doesn't mean it will work for your ds. For example wet wrapping my ds was one of the worst experiences I've ever had, although it worked for jimjams ds.

Keep going, things will get better but definately get those emollients and bath oils sorted out.

This is a little off the subject, but have any of you with children with severe excema tried bathing them only in filtered or bottled water. I ask because my dd (16 mo.) has had two bouts of really bad excema (cracked and bleeding in places) and both times occurred when we were in the usa. The first time she was breast fed and my diet hadn't changed and the second time she was on solids, but her diet hadn't changed. It was only the air and the water that changed.
Back on the subject, don't forget that a large portion of the warnings on drugs are to cover the backs of the companies that produce them. Have you ever read the potential side effects sheet for calpol or birth control pills?

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