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Psoriasis - help

(33 Posts)
GooseyLoosey Wed 23-Jan-13 08:37:02

Dd is 8 and has been diagnosed as having psoriasis. She is becomming increasingly upset about it as she feels it looks unsightly and there are 2 little patches on her face now. She cries every night about it.

What can I do. I took her to a consultant who prescribed vitamin E creams. They make no difference. Hydrocortisone creams do help but everyone says she should not use them for more than a day or so. I have used every emolient known to man. She takes oral vitamin E.

The consultant says she is too young for a light box and because her skin is very fair, says that should be a last resort any way.

Nothing is helping and I feel I am letting her down. The psoriasis is spreading and there seems to be nothing at all I can do. Does anyone have any suggestions at all?

SilverBaubles33 Wed 30-Jan-13 08:12:23

PS meant to say gf oats widely available in supermarkets and will be labelled such.

SilverBaubles33 Wed 30-Jan-13 08:11:36

Oars are naturally gluten free but often processed with wheat, so contamination occurs.

There are some great recipes for gluten-free cakes and biscuits; commercial ones tend to dryness in my opinion.

It's not a widely-known condition and I dont know why.

Thinking of you and really, just by educating yourself, talking to her, listenubg and showing her you are trying to help is wonderful. Good for you!

GooseyLoosey Wed 30-Jan-13 08:06:56

I can't tell you all how much I appreciate all of your input. Even if there is no magic cure, it is good to know that it does not stand in your way. I really am very grateful for all your suggestions and stories.

What I have found astonshing is how little there is available in pharmacies. I have been to enormous Boots and asked what they have for psoriasis and the answer is almost nothing. No vitamin D creams, no coal tar. Absolutely nothing. Even the creams that the dematologist recommended have ceased to be manufactured.

Spent last night looking up Gluten free. Dd freaked when she saw no biscuits until I reassured here there were gluten free ones and chocolate was OK. One question on this, I couldn't quite work out if oats should be avoided. Do any of you know - I know they don't have gluten in but seems they are often processed alongside wheat. I would be much easier if they were OK.

Have ordered dead sea salt and other creams mentioned.

SilverBaubles33 Wed 30-Jan-13 07:16:40

Some lovely posts here.

Also, you mentioned her not sleeping well; stress is a huge factor as I'm sure you know. It might be worth trying a children's sleep/hypnosis tape as she's going to bed. Maybe set it up so she can turn it on herself if needs be if she wakes in the night/early morning.

colleysmill Wed 30-Jan-13 01:23:47

Just seen this thread. I wish I could offer lots of words of comfort but instead big unmnet hugs to you both.

I was 11 when I was diagnosed with psoriasis so I can really emphasise with your dd. Mine started gradually but rapidly turned to being chronic severe and sadly has been ever since.

You are most definately NOT letting her down. My mum always felt very guilty about my skin ( the family gene comes strongly genetically from her side of the family) and subsequently fought tooth and nail to get me treatment (this was 22 years ago). This included inpatient treatment (it was the 90's!) and she cried when she had to leave me on the ward. Lordy she followed the whole bloody palarver of dithrol (told you im ancient!) to a tee as well!

The best thing is you are under a dermatologist from a medical point of view. My experience would agree is 8 is too young for light treatment (i had my first dose at 13 and I have had an awful lot over the years which hasn't really been a good idea tbh - but I'm talking 8 courses that are in my notes and there are more in my notes that have since been destroyed)

Have you thought about holistic medicines? I don't know if 8 is too young but I tried Chinese medicines and homoepathy in my teenage years - neither of which really helped me but the Chinese herbs totally cured my mums.

My positives are:
Psoriasis has not ever, however bad, stopped me doing anything I wanted to do in my life. Mine is still very bad if untreated but I have a professional career, forged long lasting friendships (i was never bullied either at school) and have had too many very loving relationships where it was just accepted as part of me.

I do now take medication for mine (its that bad) but even then I took meds when pregnant and managed somehow to produce a bloody gorgeous ds.

This is now an epic post! Best wishes smile

Tigerbomb Wed 30-Jan-13 00:36:50

Another Psoriasis sufferer here and I really do feel for you and your daughter.

Dead sea salt worked (briefly) for me but then did so many other creams/diet/etc - it felt like that I found something that would help but then would stop working a few months later. The key is to keep trying -but it never fully goes away. The winter months are also worse for me. I currently have it on my face, hair, hands, elbows, trunk and small of my back. It often cracks and bleeds. I also get small lesions that look like chicken pox scattered over my body too.

I think the key is to keep trying things, unfortunately there is no wonder cure just a case of trying to manage the flare ups. I am currently back on E45 after it stopped working for me about 6 years ago - it seems to be helping a little now

NorthernLurker Tue 29-Jan-13 23:21:59

Both my older dds have psoriasis. It sucks.
Dd2 (12) has struggled with very dry skin on her eye lids too. We used a lot of e45 and vaseline and then a little eumovate has cleared it up almost entirely.

chelseamorning Tue 29-Jan-13 21:22:16

Hope's Relief Cream is very good for psoriasis and eczema. It contains licorice, calendula, Manuka honey, aloe vera and gotu kola. Really helped my DP's psoriasis.

Most good health shops sells it, and also available online

SilverBaubles33 Tue 29-Jan-13 17:23:17

No it's really not trivial, it made my life utter hell, but you sound so proactive and engaged I really think she will be ok. The NY stuff smells divine; I found the tar creams really pungent.

I think there's a big link with diet, but not enough research done sadly. The green smoothies really cleared up my skin, can't remember exactly what I put in them but let me know if you want to pursue ut an I'll look it up. Google 'green smoothies psoraisis' there are also some online forums sharing experiences.

Gentle washing powder, natural materials all that stuff in sure you're already on top of it.

nightcat Tue 29-Jan-13 13:21:29

well, susceptibility to gluten problems can be genetic, but symptoms can be many, varied and complex

GooseyLoosey Tue 29-Jan-13 11:31:49

I hadn't considered gluten sensitivities at all - I thought it was genetic rather than dietary, however I shall certainly do so now.

She has big cracked patches on her eye lids and the creams I can use there are so limited.

Will go and look in Neal's Yard. At the moment, I think I would spend my last penny on this. Know it's trivial as things go, but not to dd.

Thanks all. Any more suggestions gratefully received.

nightcat Tue 29-Jan-13 10:12:06

Goosey, have you considered gluten sensitivity? There are publications that link gluten to psoriasis, eg:

SilverBaubles33 Tue 29-Jan-13 09:47:16

*special treat, not 'social'!

SilverBaubles33 Tue 29-Jan-13 09:46:16

You sound like a really lovely mum. Poor girl, it's horrible for her.

Totally agree with fergus re diet. Try googling 'green smoothies' they changed everything for my skin. One for breakfast, you can whack in all sorts of good stuff, avocado, coconut oil, etc and she won't taste them.

Topically, I'm finding Neals Yard Rose wild rose beauty balm really soothing and reduces redness and itching. Also smells gorgeous, not cheap but she won't smell like a melting road and it can be a social treat rather than something shameful and unpleasant.

Please don't feel alarmed as you sound very on top of things, do watch out for signs of depression. Maybe role playing some responses to ignorant or hurtful reactions will make her feel less powerless.

Avoiding gluten has also worked miracles for me.

Feel free to PM if you want to offload; it's distressing for all concerned and you have my sympathy and very best wishes.

Sunworshipper Tue 29-Jan-13 09:30:50

Goosey I'm sorry to hear your dd is struggling. I can't recommend anything for the physical symptoms but as someone who has personal experience of living with an unusual appearance I can recommend contacting Changing Faces to build up her self-confidence. Their children and families service is brilliant and can support you and your daughter through this experience and how she feels about it. They have lots of practical advice too from what to say if someone asks a question or how to deal with staring.

GooseyLoosey Fri 25-Jan-13 10:15:45

Thanks again - had no idea coal tar was affected by the light. Think its very mild as GP spent a long time lookin at what might be appropiate fot a young child. He waned toavoid anything with steroids in. Thanks for taking the time to talk to me.

berryfreeze Thu 24-Jan-13 16:14:52

Also be careful going out in the sun with coal tar as it is light sensitive

berryfreeze Thu 24-Jan-13 16:12:19

Goosey just be a bit careful with coal tar cream on face, some of them are very strong and van be an irritant on eyes and throat, if it is overcounter check with pharmacist first, and make sure it is a very mild one, I had a very strong one mixed with a steroid cream which was great for body and but could not use on face, even.thr times I have used the polytar shampoo it has been quite strong, I hope it clears up for her very soon, I have managed to live with it now, but for a young girl it must be hard.

GooseyLoosey Thu 24-Jan-13 13:17:19

Thanks Berry - it is good know know at least itwill probably improve in spring.

Saw GP today and he suggests trying Cold Tar creams on the worst bit for a while.

berryfreeze Thu 24-Jan-13 11:10:19

Hi your poor daughter I have had it for the past 30 yrs and it is awful, though mainly on face it has been ok, I think because I always moisturize, a few ideas Elizabeth Arden 8hr cream is supposed to be quite good, Dr Hauskua rose day cream(they did do little samples) ,I was using Epaderm Ointment last year( emollient bath additive and skin cleanser) and found that really helped, the thing is when the weather gets better it will clear up, but also be careful of any throat infections or tonsilitis that can always make it worse.

GooseyLoosey Thu 24-Jan-13 10:29:20

Thanks Sure. At the moment, she can't imagine it ever clearning up and it is the first time I have not been able to make things better for her. I feel so frustrasted.

SureFineWhatever Wed 23-Jan-13 22:42:02

I'm sorry for your DD, I got psoriasis from about 10yo, quite severely. It is very difficult at such a young age. Every morning as I woke up I made a wish that it had magically disappeared overnight; sadly that never happened.

I'm 30 now and have had periods when it has almost entirely cleared, and other times when it has flared severely. Obviously winters are the worst, and even with a relatively small amount of sun exposure in spring and summer improves it dramatically.

In recent months, I've overhauled my eating and diet (switched to very low carbohydrate, moderate protein and high fat) and, funnily enough, my psoriasis is the absolute best it has ever been!

Obviously I am not advocating a lowcarb diet for your daughter, but I would strongly recommend you ensure she has adequate fats every day. I have been on a diet for as long as I can remember, and have avoided dietary fat of all sorts for years. Adding a decent amount of fats back in to my diet has improved my overall health, and has all but cleared up my skin. Oils (preferably olive and coconut), and most importantly good sources of animal fat (fattier, more gelatinous cuts of meat, and butter) are great.

Another thing to try is supplementing with gelatin. A teaspoon of gelatin (the stuff you get in the baking section is fine) in a hot or warm drink is amazing for skin. Also the obvious supplements like Vit D and a zinc or Hair Skin Nails complex are good too; you might like to ask your daughters doctor about supplements she can take at her age.

There is a lot of reading out there about fat versus carbohydrate based diets; a quick Google of the primal diet would be a good start. Mark's Daily Apple is fantastic.

StairsInTheNight Wed 23-Jan-13 19:34:49

its 5.99 on amazon with free postage so not huge investment. Hope you Get a result like i did :-) x

GooseyLoosey Wed 23-Jan-13 12:23:09

Bump for the lunch time crowd. Any suggestions?

GooseyLoosey Wed 23-Jan-13 11:42:03

Thanks Stairs - at this point I would try almost anything and can't see that it could do any harm. Will see if I can get something.

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