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please help/share!!!....weaning off steroid creams for a baby?

(15 Posts)
happyathome Mon 19-Oct-09 11:12:39

i have a 9 month old DS who has had increasingly strong steroids for his ezcema.ended up with fucibet and on less furious bits,fucidin.gps said use until clear,until recently when gp had accidentally talked to a dermotologist about it and he sais carry on for a few days with cream after it's cleared to prevent rebound ezcema.anyway,i read on the net too that it's important to wean off them slowly.am angry that gps did not know/advise this(they will not refer me yet),but i worry like mad that i am doing steroids on a daily basis and although not dermo strength i feel DS shouldn't be constantly on them.I feel maybe the weaning off approach sounds more sensible to me,but how do i do it exactly.any experience anyone,and what did your gp's recommend.I would ring gp but they seem a bit vague and the approach we have only seems to dampen the ezcema down as we are actually using the cream.gps keep being adament that a dermo wouldn't do anything different(no food tests,just creams) and it's probably just ezcema??!hmm.
DS has it all over too so whole body creaming to me seems dangerous to be doing it all the time.gps say...oh only do it for 7 days then when you go back you get something stronger and another 7 days..doesn't make sense.
i presume docs wont refer me for food tests because DS doesnt have any other symptoms beside ezcema??!!...would you eliminate from your own diet if you were me(like dairy...DS is BF and on a basic weaning diet..no wheat,dairy,trigger foods as yet)...if you would what calcium supplements would you take yourself?
i'm going out my mind and am confused.would you do once a day,then every other day e.t.c. or use a less potent cream for a bit.
please help!!...thankyou.i think maybe your answers may help others in this situation too as i can't find any threads on this subject.

luciemule Mon 19-Oct-09 12:02:52

I think you should phone the national eczema helpline and they can give you further info on what to do.
Such severe eczema in such a young baby signals to me that there is more to this than just being eczema.
Eczema is caused by the sufferer's inability to produced oils as well as other non-eczema sufferers and therefore, perhaps a specialist may be be able to offer help regarding this.
I've read quite a lot about too much moisturising and it certianly made a huge difference to my chronic eczema when I stopped applying aqueous cream every hour all day. The skin can become over dependent on moisture and so by retraining it, the eczema can calm down. Have you tried appying a layer of pure vaseline to his skin - no other moisturisers/creams and see what happens? Vaseline and a nutrimoist moisturiser are all I use. I moisturise face and hands after I wash my face in the morning and at night. If I get very wet hands in the day, say after washing up, I put some on then too but apart from that, I only apply vaseline to my lips as they dry out very quickly.

Although steroids are good for treating flare ups, I used them from my GP for years and now my hands look a lot older than those of a 32 yr old.
I would try to more specialist advice if you can.

happyathome Mon 19-Oct-09 14:17:47

thankyou luciemule.much appreciated.like you say,maybe more advice needed.i will ring nes..
anymore opinions/advice would be welcome.
thanks so much

babybarrister Wed 21-Oct-09 14:31:31

my limited experience also points to at least getting DS tested for allergies - when did the excema start?

my paediatric dermatologist believed that babies with excema were virtually always babies with allergies ....

good luck and be pushy!

brimfull Wed 21-Oct-09 14:40:30

I think you need a dermatologist to see your ds if nothing seems to be improving.

My ds had terrible eczema as a baby and toddler and was on regular steroid 1% but not all over his body.

I found his eczema improved a lot when at age 2 he went off milk because he didn't want to drink it from a cup.
He has been tested for allergies because he has nut /egg allergy. He was negative for milk but I still think it maeks his skin flae up. It gets noticeable worse when he eats a lot of cheese.
There is calcium in green leafy veg and tap water .Dietitian reassured me he was getting enough from those as long as well as occassional cheese on toast and lots of fish.

As for the steroid reducing you really need expert advice. The reducing of oral steroids is quite straight forward but I am unsure about topical steroids. Again a dermatologist would know.

It is so hard when they are suffering so much- I really feel for you. Sounds like you need a bit more support from dermatologist and as suggested the eczema society.

Sheilsie Wed 21-Oct-09 20:38:45

Happyathome, your situation sounds very similar to what happened to me. I was using hydrocortisone (either 0.5%, 1% or 2.5%) on my DD almost every day and had a couple of blast of fucibet too when the eczema on her face, between the ages of 3 and 7 months. The eczema was always visible, but varied in severity. I was at the GP constantly and kept asking to be referred to a dermatologist but he kept resisting, saying they wouldn't give me anything different.

Finally, the GP gave in and I got a referral. The dermatologist told me that the 2.5% h/c would not even touch my DD's eczema (if was that bad) and did not seem keen on Fuciden or Fucibet. We were given steroids called Trimovate (for face) and Elocon (for body). I had to use them for 5 consecutive days at the start (in June) and was then told to use them just once or twice a week as required (i.e. if eczema visible again). My DD has had a few other flare ups since so had to go back to another 5-day blast, but I'm amazed to say that I haven't had to use any steroids on her face at all for the last 29 days (I'm counting). The hospital also did allergy testing (skin pricks and blood tests) for loads of things.

My DD has a cows milk allergy (hives/vomitting) and is on hypoallergenic milk. Prior to that she was breastfed and I noticed a significant improvement on moving to the formula. This was no doubt due to the milk I drank being passed on through my milk, and I'm kicking myself now for not having realised that cows milk was aggravating her eczema and excluding it from my own diet.

Good luck!

happyathome Thu 22-Oct-09 15:07:47

just found these messages.thanks so much everyonesmile.it helps to know there are more in the same boat as me.Sympathy from me to you all also for what you have had to endure.looks like i will be visiting the gp againwink.don't think i can rest till i've had dermo advice and possibly testing as i too feel it could be food or dust and i'm just covering the problem with creams.
appreciate all your advice.if anyone else wants to join in,feel free.maybe this could be a 'steroid cream'/baby ezcema support thread??!!

babybarrister Thu 22-Oct-09 19:37:12

just so you know my DS had terrible excema at2-3 months - took him to GP millions of times and it felt like no-one would listen as I though he was allergic to milk- finally referred to paediatric dermatologist who referred us to allergy people immediately and in fact put him on hypo allergenic milk. It was her who said that v few "genuine" excema babies - vast majority is allergy. Of course when DS tested at 4 months - anaphylactic to milk .....angry

happyathome Thu 22-Oct-09 20:59:25

OMG babybarrister.shock....poor you and DS.why won't these gp's listen and act sooner rather than latersad.didn't know they could test so young.my gp said would be difficult doing skin tests on my DShmm.i thought he would have to be older too.thanks for sharing! and thanks again everyone and your best wishes.I will start a baby ezcema support thread in this topic under the title 'baby ezcema support thread',just incase anyone wants to chat about it.People may miss this thread because of the title.You are all welcome to join mesmile

babybarrister Thu 22-Oct-09 23:48:08

bollocks that difficult doing skin prick tests on babies - DS had them done at 3 months and all entirely accurate - I should add done by St Thomas Allergy team ie not some quacky health food shop ......!

IMO you need to tell your GP who you want to see - are you in/near London? if so go to St Thomas or St Mary's. if not post up here again and someone will recommend someone near you.

my ds [3] absolutely fine now - frankly does not really have excema - why, because we know what he is allergic to! He went in 2 weeks from having a bleeding scalp and bleeding limbs to looking like an advert for Pears soap [which he still does!]

It makes me furious that there seems to be so much total ignorance amongst GP s....

BTW I did not know at the time but you can in fact buy over the counter hypo allergenic formula - either Nutramigen or Neocate - they are expensive but you can effectively run your own trial to see if it is milk allergy which is obviously one of most common- you can then get it prescribed.

good luck!

happyathome Fri 23-Oct-09 10:16:50

thanks babybarrister for your support and info.i definately will look into things.i live in the north west(lancashire),so would be useful to have info from this area too.

babybarrister Fri 23-Oct-09 10:36:11

I suggest that put a new thread up here asking for paediatric allergy specialists in NW - if you do not get anywhere I would suggest biting the bullet and coming down to London for the day - will be the best train ride you have ever paid for !!!

happyathome Fri 23-Oct-09 20:26:00

will bear it in mind babybarrister.thanks again

Sheilsie Sun 25-Oct-09 15:29:33

Happyathome, if you are interested in trying Nutramigen hypollergenic milk then I have about 6 unopened tubs going free (for the postage charge). These are left over from when my DD was moved onto Neocate. Let me know if you're interested. I could just send one to start with.

Alternatively, if you ask your GP then he/she should be able to prescribe Nutramigen or Neocate (even if they're never heard of it before).

Or you could try excluding all milk products from your own diet for a few weeks.

happyathome Tue 27-Oct-09 00:07:25

sheilsie,
just found your message.thanks so much for the offer of nutramigen,it's really kind of you,however,i am still BF so don't want to really give up that just yet.looks like i might try dairy exclusion myself first and if there's a result,i may then ask gp like you say for it. i need to know though how to do the dairy free safely and whether to supplement but the gp went hmm at that suggestion and didn't give an answer.guess you're meant to do it under their supervision,but i may go it alonewink.
glad you got some answers and have seen some improvementsmile.
thanks again
happy x

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