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[Victoria1407]

Just wanted to say hello.  I have just joined the site, looking for help, support and understanding from others in my mission to help my 12 year old son who has what was diagnosed as guttate psoriasis in February 2015 (had it from September 2014 but took GP 6 months to diagnose it - don't get me started!) but has spread over at least 50% of his body since then.  I keep him cheerful and optimistic but on my own I despair sometimes.  He seems so young to be plagued with this and I worry about how it will affect his self esteem as he goes through teenage years.  I won't go into all the different things I have tried, but I am still looking at how diet might help him.  I know there is no cure but just want to do all I can to understand psoriasis and keep aware of what works for others that we might try.

Thanks.

[Turnedlight]

Hi Victoria nice to meet you!

[Victoria1407]

Thanks!

[Caroline]

Hello Victoria,

Welcome to psoriasisclub.
I can grasp your feeling that you want to share the problems with your son and talk with others with experience in similar situations.
You have come to the right place I think. We have a lot of different experiences and above that all this is a nice bunch of people with whom it is easy to discuss, ask questions and just chat.

Do mingle in, ask around, and we will be here for you.

Caroline

[jiml]

Just wanted to say hello.  I have just joined the site, looking for help, support and understanding from others in my mission to help my 12 year old son who has what was diagnosed as guttate psoriasis in February 2015 (had it from September 2014 but took GP 6 months to diagnose it - don't get me started!) but has spread over at least 50% of his body since then.  I keep him cheerful and optimistic but on my own I despair sometimes.  He seems so young to be plagued with this and I worry about how it will affect his self esteem as he goes through teenage years.  I won't go into all the different things I have tried, but I am still looking at how diet might help him.  I know there is no cure but just want to do all I can to understand psoriasis and keep aware of what works for others that we might try.

Thanks.

Hi Victoria and   to the site, you will find a lot of support here, as we are a growing group of sufferers who have been through most of the treatments, and can understand your concerns
You will find a lot of useful advice here on diet that may help, but if you haven't already seen a dermatologist I suggest that you get your son referred to one as soon as possible.

If ever there was a good time to have psoriasis I think now is it, there are lots of treatments available to your dermatologist now and lots more in the pipeline.

My psoriasis started when I was beginning to take an interest in girls .... And wow how that dented my self esteem, knowing what I do now I would insist on seeing a dermatologist and arm myself with the latest information.
We don't have all the answers here but we willingly share what we do know
I'm glad you found us and hope you get some good advice.
I shall go and look for a few links to places for you to start looking
Jim  

[Fred]

Hello Victoria   to Psoriasis Club.

Poor lad it was bad enough for me getting it at 25, but to get it so young must be hitting him hard. There are some who have had it since a young age and although they struggled then it has made it easier for them as they get older. Not much comfort to someone at 12 years of age, but what I'm trying to say is as he approaches his adult years and starts to do things like teenagers do he may find it a little easier than a person that gets it at say 18.

Is he seeing a dermatologist or just being seen by your GP? If he is not seeing a dermatologist you should tell your GP to refer you to one as they are better suited to help him.

Diet: I'm not an advocate of it myself, but we do have some things that may interest you here:  Natural Treatments For Psoriasis But I would say let the lad enjoy his food.  

At least you accepted there is no cure and that will help. But there are a lot of things that can help, and I would say if he can get it out there. Start telling his friends and family, mention it to his school teachers, but don't get a complex about it. It's not going to be easy for him but the more he shares and gets people on his side now the easier it will be for him later on.

Victoria none of us here are professionals, but we know more about living with psoriasis than anyone in a white coat does. So just dive on in, you will find us a friendly bunch and tell your son we will save him a seat here for when he feels confident enough to join us.  

Regards to you both.

Fred.

[Victoria1407]

Thanks already for your help.

We are seeing a dermatologist, the GP finally referred us and we saw one in February, who prescribed UVB light treatment at the local hospital.  This was three times a week, we had to go early in the morning and ended up late for school every time we went because of the distance.  This was successful and the psoriasis started to go down, but then suddenly they said we couldn't have any more treatment because of the need to ration, which I understand.  It started to come back, so the second dermatologist prescribed dovobet and dovonet, alternating each month, plus exorex for the evenings.

We went on a few holidays in the summer, and the sun and seawater seemed to work some magic as I had expected, and he was almost free by September, however by the end of September it was back with a vengeance.  I am unhappy using steroids on his young skin, and if we used it on every area we would be using a bottle a day. 

The hospital then decided they wanted to do a biopsy, when I went they made some pretty unhelpful remarks about how bad it looked, then said he could have more light treatment, once we got the results of the biopsy in four to five weeks and he had an appointment with another consultant.  Over this time it got so bad that we took the step of buying our own UVB light machine at considerable cost, and have been using that - very carefully and according to manufacturers instructions, and have had some success.  I know we will be criticised by the profession for doing this, but it seemed like the best option.  We are due to see the dermatologist next week.

Son is very open about it, he goes to a lovely school where they are very accepting of difference in whatever shape it takes, and has not had any adverse comments at all.  He has good friends and is good at sport, which strangely often seems to help with stuff like this.  I have taught him that there are worse things in the world, that this is part of him and we have to continue to manage it and look for solutions.

[Fred]

Sounds like a good lad, and he has good people around him. That will help.

Switching between Dovobet and Dovonex (I think that's what you meant) doesnt sound like a good idea to me. Dovobet is a potent glucocorticoid steroid and it not a long term thing especially for a young person. The recommended treatment period is 4 weeks with a maximum daily dose not exceeding 15 g also The safety and efficacy of Dovobet ointment in children below 18 years have not been established.

See here: Dovobet Ointment

And yes you will get criticised by the profession for doing your own light treatment. I know you are following the manufacturers instructions, but I would agree with the professionals it is wrong and they stopped it for a reason.  

Hopefully your dermatologist will have better option for you next week, but please do be honest and tell them you have been using your own light treatment.

[Grizzly Bear]

Ey up lass

I use to live near Huddersfield & i use to go to the Halifax dermatology up there.

They were very good there.

Steriods, NOOOOOO

You are right, young skin + steriods don't mix.

Unhelpful remarks from hospital gets my back up. Complain to PALS Victoria.

andy

[Caroline]

I agree with the boys Victoria, that does not happen very often, but all those steroids on his skin are definitely not good.
Also the intensive UV... Not so good.

You see that the combination of sun and sea, and perhaps also the pure fun, helped him much in his vacation. That is very recognisable.
Also sports is very good for your son. The activation of his body in sports, the blood fiercely running through its veigns, it is all very relaxing. I am sportive myself and feel the best after having been busy at the sports school.

But maybe you ought to look a bit further now to a harmless systemic. I would not recommend biologicals right now myself, he needs his immune system in the best order it can be, which would be no medication of course, that is obviously the best way. Keep away from medication as long as possible. But if needed, try to find something as harmless as possible.