Hello

[Toffeedog]

Hello,
My name is Bev and I am Mum to Ewan (nearly 13). Ewan's psoriasis was triggered almost three years ago following the sudden death of my Dad. Initially creams, emollients, steroids....you name it Ewan has tried it! Last year he had his first course of phototherapy with minimal results. Two foreign holidays have had good results on Ewan's skin but very quickly the psoriasis returns.
By October last year Ewan was hospitalized for 10 days as his skin was very unstable. Regular creaming shows minimal improvement.
We have been seeing the dermatology consultant regularly. In December / January Ewan had another course of phototherapy....with no improvement.
Methotrexate is the next stage of treatment but we have now hit a stumbling block.....Ewan's blood results show a raised liver test result (LDT). In two weeks the result has doubled. Ewan is now being referred to Birmingham Children's Hospital to see the hepatic specialist.
I am sick with worry.
Ewan continues to be Ewan: a lovely happy child who does not appear phased by the constant feeling ill and tiredness, the regular creaming and the itchy skin! His school is fantastic.....he has his own bathroom so he can cream; everyone at school knows about his skin and he has never experienced negative taunts or teasing.
I guess I am trying to gain some reassurance  (??!!) or some information from others.
Thank you in anticipation of your responses
Bev x

[Luvvi]

Hi Bev (and Ewan)  I suffer from psoriasis and recently we have discovered my 15 year old son has developed it too.  The guilt is awful along with the worry as I have been 80-90% covered and he has seen how I have suffered so trying to reassure him that he might not get psoriasis that badly has been my main focus!  I only developed psoriasis 6 years ago so I can't relate to how you feel like as a teenager to develop it quite badly (there is a young people's board if Ewan wants to join)

Having been on Methotrexate and having abnormal blood results I understand your concerns.  Hopefully no real damage has been done and the consultant will be able to reassure you when you see him.  At the moment I am using Fumaderm which is unlicensed in this country so I am not sure if they would offer it to Ewan but its certainly the only thing from all the oral and topical meds which has helped me. UVB/Sunshine only provides limited results on my psoriasis.

The important thing just now is to keep him comfortable.  Moisturising and more moisturising! I think children are much more resilient than we give them credit for and if you keep him informed in making decisions etc he should be able to cope much better.

Liz

[Toffeedog]

Dear Liz,

Thank you for your response.

I am keen that Ewan is seen as soon as possible by the hepatic specialist...yesterday I asked the questions around 'is the liver triggering the psoriasis', or 'is the psoriasis triggering the liver'.....that is the magic question!!
Ewan now has a nasty tonsillitis so his skin is worse than ever!

For me it is coming to terms with Ewan having a chronic condition.....

Ewan copes exceptionally well.

I will encourage him to look at the young peoples forum.

Thanks again

Bev

[Nosmo007]

Hi

I had methotextrate for 18 months and was no better off. My liver function tests were up and down but after I came off the methotextrate (my request) the liver function test went back to normal levels.

I would bring him off the methotextrate knowing what i know about it.

x

[Toffeedog]

Hi
Ewan has not even started the methotexate yet and his liver function is not correct. The LDT is three times the normal range. The paediatrician has recommended not to start it to the dermatologist.
We are waiting a second opionon!
Thanks for your feedback
We will keep you posted!
Bev and Ewan