pityrasis lichenoides

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Hi my son has only jst been diagnosed in the last 3 wks after 8 months of being missdiagnosed by every doctor you could hope to meet. He was 4 and a half when the rash started and at first I was told he had chicken pox and then a viral infection ,it then jumped to oh he has meningitis and all hell broke lose!! I am waiting now to go back to see the consultant to find out more about it and what treatment my son will be offered. All in all for 8 months my son has been through hell with different blood tests biopsy`s creams, lotions and potions some of which made is skin worse. I now can see a way forward and I now have an answer for all the nasty people who singled out my son at nursery ,told their kids not to play with my boy, who complained to the education that my son should not be allowed in nursery to play with normal children and to those people who have spread nasty rummors. You should all be ashamed. Sorry to all who read this but Ijust had to share.

Thanx for reading. xx :twisted: :roll:

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    Hi just read your experience and thought I would also share mine. Its been 3 months and today my 6 year old son was finally diaganosed with Pityriasis. He has it quite bad all over from head to toe. I too was also sent away from doctors 4 times until I insisted on blood tests which were clear but then it led to the refferral to a Dermatolgist at last. Why in this day & age our little ones have to wait so long is beyond me. School has assured me he has no bullies due to his appearance but I fret all the time especially on PE days but he is so happy I dont want to make him feel different and exclude him from any activities. I now have to wait another 5 weeks before Phototherapy treatment can begin on the NHS. Bascially course of UVB light and hope it will clear the condition up. I will be chasing the appointment up and will apply much pressure as possible to get it sooner, like I did the refferal otherwise I would still be waiting....... I too feel like others have disscussed behind my back the condition, funny how everyone becomes a doctor and how they would do things differently, makes me feel like I have let him down when I know I have followed everything up and not slept for weeks. If the all the Docotrs say its viral and will take weeks to go how can u say - No sorry I dont think it is...Its a serious of elimations and u just have to keep gonig back and back. Stuff everyone else and their opinons, today I am relieved I know what im dealing with - I will continue to pester the NHS to chase his appointment - his 6 and its been too long comming xxxxxx
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  • Posted

    I cannot thank this forum enough, my son was diagnosed with this when he was 6 after being told by the doctor that it would go in 6 months since he has had it since he was 2.

    I also had the looks like your son has chicken pox or some other dirty disease. But it is back and he is now nine. Doesn't bother him but really bothers me, i do nor like to see otherwise beautiful innocent skin erupting in these things. soz but i do hate it tell me is there a cure.

    please help

    sue

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  • Posted

    My daughter is now 13 and was diagnosed with pityriasis lichenoides following a skin biopsy when she was 5, after being covered with this for weeks. Over the years we have tried topical corticosteroids and an 8 week course of oral antibiotics but I'm sorry to say that neither of these had any lasting effect. In the early years, outbreaks were far more frequent than they are now - often starting on one side of her trunk and spreading round until a complete circuit had been completed. 18 months ago she had a particularly bad outbreak which got infected and required antibiotics - since then it has been a lot quieter, but still the occasional outbreak just to remind her it hasn't gone away. I too worried about what people thought but she doesn't - everyone in her class at primary school knew about it and I made a point of mentioning it each year to new teachers. At high school now and the PE teacher knows about it as they went on a residential when she had it - classmates have asked about it but she just says it is a rare condition, not chickenpox which seems to be what people think it is. We hope that one day it will disappear but have learned to live with it.
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  • Posted

    Hi, I thought that I should share my experience of this horrendous, limiting skin condition. I was diagnosed with pityriasis lichenoides back in the summer. I have several patches of scaly, itchy skin. The mail areas include my legs, arms back and scalp. I have used a skin lotion called betcap and this keeps my scalp at bay. However I cannot get my arms legs and back to clear up. I have used topical steroid creams, shower lotions, sunlight , moisturisers/aqueous creams, emollient creams and even Epsom salts to try and help clear up the patches. The nose visible being on my shin. This has been there for a good number of years and was misdiagnosed as eczema. When a patch on my upper thigh became infected my gp decided to refer me to a dermatologist. The dermotologist performed a skin biopsy and diagnosed pityriasis lichenoides. That was that. They gave me some cream that helped but didn't clear up the patches. 

    Now I find that when any area of my skin becomes damaged or inflamed the pityriasis takes hold and a breakout of red scaly skin moves into position. 

    This happens from a simple scratching of the skin surface from an itch. 

    On a couple of occasions the patch on my leg has become infected and I have been hospitalised due to the infection tracking up my leg and into the glands in my thigh. This caused my kidneys to become swollen and they almost shut down. 

    I am now fed up of the horrendous patches all over my body. I cannot wear shorts as the horrendous patches cause me anxiety and nervousness. 

    On my arms, the patches are small but common. They are almost in identical spots on each arm. When they become irritated they itch and when I can't help myself I itch them. They then look like scabies. This is highly embarrassing. 

    I work often in hot countries. When not in work and colleagues ask me to play sports I am unable to wear shorts and am often asked why. I just make up excuses. 

    When I was on holiday last summer I wouldn't go out to the pool because of my skin. I couldn't play with my nieces and nephews. My girlfriend was unhappy that I wouldn't go out to the pool. 

    My life has become obsessed with trying different remedies and finding out what helps reduce the amount of patches. 

    I find this condition to be very limiting, upsetting, depressing, and embarrassing. 

    I am yet to find a cream that really reduces the inflammation of the pityriasis lichenoides and will welcome remedie that people found worked. I am going to get back onto the dermatologist in the next week to see if they can prescribe me with something that will assist more with the patches than they gave me before. Apologise for the long story. This is really getting to me.  I am a 26yr old male. 

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