A mum of a son with psoriasis looking for support

Posted Tue 9 Jan 2018 1.23pm by mumofson

Hi there,

I'm new to the site and looking for some thoughts please.

My son was diagnosed with inverse psoriasis at the age of 6. The treatment we have for this area (balneum plus, calcipitrol and protopic) have meant as long as we use them regularly the psoriasis stays at bay.

Since his initial diagnosis my son now has scalp psoriasis and ear psoriasis, as well as patches on his back, face and toes/nails.

I'm just wondering if our expectations from treatments is realistic given such a positive result for the inverse psoriasis. With his scalp we have been using the moisturiser every day and night, along with coconut oil for a few hours twice a week, t-gel a few times a week and daily calcipitrol and protopic ) I know the scalp is harder to treat and we have managed to reduce the anger of the plaques but it's still there. Is this the best we should expect?

We have been referred again to the dermatology team (but it's a bit of a wait) as it's been spreading but I just wondered if the treatment on his scalp seems excessive. My son is very good with it all but is getting fed up with having all these creams put on him and just wants it gone bless him.

I saw some people talk about the lush moisturiser so I've just got that to try so we'll see how we go. I just wondered people's thoughts.

Thanks for reading

Posted Thu 11 Jan 2018 5.45am by Loopy

Hi there, I'm sorry to hear that your son is suffering, I emphasize with him. I find if I use cocois prescribed by my GP for a week my scalp is near 100% better, then I use it once a week to keep it at bay. Then not at all until it flares up again. I have noticed that my psoriasis is worse when I eat sugary food especially chocolate, not sure if your son has noticed any triggers? Good luck

Posted Sat 13 Jan 2018 8.30pm by mumofson

Thanks for your reply Loopy, that seems like a far better regime.

We're thinking of starting a food diary to see if we can spot any triggers. How long does it take for the flare up after you've had too much sugar?

Fingers crossed the referral will help us.

Posted Sun 14 Jan 2018 2.22am by Isobel1986

I found avenno scalp shampoo works and body shop ginger shampoo works and Zambesia Botanica Scalp Application 100ml tube and shampoo works also i have been a suffer of psoriasis for 20 years and nothing worked from gp

Posted Sun 14 Jan 2018 6.12am by Loopy

Hi mumofson

If I eat too much sugar I will start itching all over about an hour or two afterwards to the point nothing stops it.. however with my skin if I scratch any part of my body generally it will develop psoriasis.

I am currently getting it in my ears !!! It truly is a pain in the backside!!

I am starting phototherapy in the next couple of weeks so hopefully this will work..

Good luck with your sons treatment.

Loopy

Posted Thu 22 Mar 2018 11.22pm by Eliza
I have had psoriasis for as long as I can remember (I am 19) and have had a variety of treatments with varying success.

Psoriasis can be really tough on the whole family. Having had it throughout my life, I have tried a whole range of treatments. Doubtless to say there have been many tears over my psoriasis and how fed up I have been by endless appointments with dermatologists and constant treatments that don’t always work. However, my parents were so supportive throughout the whole thing (and still are!). They made me feel like I wasn’t any different to my friends, they reminded me that it isn’t something to be ashamed of. Honestly, just being a supportive parent will have such an impact on your son. Being seen as something more than my skin condition was one of the best things my parents could have done for me. You will be supporting him in amazing ways just by going with him on this journey.

Posted Fri 23 Mar 2018 11.08am by mumofson

Thanks for your words Elize, it means a lot that you have taken the time to write them.

It sounds like your parents were a great support. I hope to be the same for my son

Posted Sun 25 Mar 2018 11.43am by lindylou

I echo Eliza's statement. I have had psoriasis since 2 weeks old (I am now 66) and had very loving, supportive parents. I have had remissions but at the moment have severe inverse psoriasis and am under Dermatology. I won't pretend that life hasn't been tough at times, particularly when I was a child and other people seem to give themselves the right to stare or comment. Times have changed tremendously since then and people are a lot more informed. He will get through it with your love and help. A lot of us on this site have gone on to have good jobs, get married and have children so he does have a future. Having lived with psoriasis all my life it is very much a part of who I am. At times I hate it but at other times don't think about it at all. Thankful always to my parents for their love and compassion.

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