Monday, 16 June 2014

5 months in...

Apologies for the late posting again. Josh is finding it difficult to sleep in the heat - he is very itchy and still waking up at night. However he is managing to go to school each day.

All of his food has to be cut up very small so he can eat it because he still struggles with opening his mouth. Shedding has decreased quite a bit, his bedding still needs to be washed pretty often as his skin still bleeds and oozes.

There is hope though, he seems to have more good days recently and we are hoping that he will be able to return to football next season. He watched the 1966 world cup game last night and enjoyed it!

Ok, so now for the pictures. This is Josh at the end of last month (22nd May):

After reading this post by Dr. Fukaya we decided to add some topical vitamin D to Josh's face alongside his daily active B vitaimins. This is Josh now:

His skin has improved a lot :)

I am going to continue with the B vitamins and topical vitamin D for now. He still has bad days but his skin seems to heal much quicker afterwards.

Josh's verdict this month: "Definitely getting better!"

I would like to sign out by saying 'Happy Healing' but this type of healing is far from happy and it seems a little silly to say so. So how should we greet fellow Warriors? I would be happy to hear your suggestions!

Take Care!


  1. Wow! Quite a difference! I'm sure he's still very uncomfortable, physically, but how encouraging to see such a dramatic improvement so quickly! Sending prayers.

  2. Wow- such huge improvements!!! But like Stacey said above, it's still very uncomfortable regardless. I know I have mini-flares that cause me to scratch a tiny spot raw - and that spot will bug me for 24 hours - it will burn and hurt and drives me crazy that one tiny spot can irritate me so. I pray Josh gets to that time soon - as one spot is better that such a large area of the body! I have been taking Vitamin D supplements and noticed a positive change in my healing time and energy levels. So much to learn and so little time! :) Stay well!

  3. That's amazing! Where did you find the topical vitamin d oil??

    1. Hi Karina, I just buy vitamin D gel capsules and pop them open - I use the oil directly on the face. I only use 1-2 capsules a day they are 2400mg. Vit D is fat soluble, so you have to be careful how much you take. Have a look at the RDA's minimum and safe maximum before you try. Josh's maximum is 6k a day for 3 months or 4k daily. I usually use 1 cap just to be safe and have regular breaks. Good luck! Louise x

  4. Thanks for the update Louise, Josh must be feeling encouraged by the improvement, hope it continues and that the football goal can be reached.
    I've been taking Vit D, B and codliver oil (among others) and I think they are all helping, particularly with energy levels but that's a top tip about applying directly with the vit D, I will give it a go. Best wishes to you all.
    Caroline x

  5. Keep going! - massive looking improvements Josh;)