Breakthrough!

I'm not sure I should be posting this, but what the heck - we have to celebrate those little triumphs!
Josh's skin seems to be improving - and I am really happy about that. It could be that this is just temporary... we know TSW is long road. But still, we have hope.

We can see skin... finally!

His chin has nearly cleared up!

His eyebrows are looking much better!

Compare this to about a week ago:-

And you can see it has improved quite a bit. Plus ^ these pics were on a pretty good day. Josh is even well enough to go back to school. We all have a bit of a spring in our step - how long this will last we don't know.

Sleep is still disturbed quite a bit. There is still a lot of scratching, patting and rubbing going on - which reminds me, I have to wash his bed clothes again. But all in all, we are on an UP :)

Panic, relax, panic, relax...

This week has been especially trying. Josh's face has been pretty swollen. He's been very itchy and accidentally scratched his face quite deeply, one day, just prior to bedtime, before he had a chance to get his mitts on. Luckily it looked worse than it was and after a few salt baths it healed up nicely.

Then he had problems with his eyelids. They were quite swollen and sore, but have since settled which I am relieved about.

He's unfortunately had to miss school and his after school activities, including judo and his favourite - football. He's missed both training and matches and he can't wait till he can start goalkeeping again.

Things we have bought this week:-

• Baby monitor (so we can keep tabs on him at night)
•  Hand-held fan (to help cool his skin)
• Face massage machine (to ease itching)
• Dead sea salts (for baths)
• Hot/Cold face packs (to cool skin)
• 100% cotton bedding

 Its been a roller-coaster of a week this week with emotions running high and spirits running low. We are going to contact our health visitor next week and see if there is any she can do to help us.

His skin is quite swollen here, its settled down quite a bit now.

The Isle of Wight

What a busy weekend! Yesterday we went to Christchurch to visit a Homeopath. It was a lovely day and we went to the beach for some sea air to help Josh's skin. If you look closely at the picture above you may just about see the Isle of Wight. Its the first place Josh wants to visit when his skin is better.

Josh loves geography. He loves learning about other countries and cultures and one day he wants to visit another country. With his health complaints we are apprehensive to say the least - but the Isle of Wight is a little of a compromise!

One of Josh's favourite food is Yoyos. He loves them, they are purely fruit, but they feel like a treat to him and they come with collector cards. Today he got the card MALAYSIA:

He's hoping to collect cards for all the countries, so he can fill his map with stickers!

As for us parents, we have been lacking sleep. He needs constant attention during the night to prevent him for scratching (he scratches while asleep) - so we have to gently coax his hands away from his face so as not to wake him. We do this 10 - 20 times a night and it is tiring. Sometimes we miss nights and this is what greets us in the morning:

My heart breaks little bit by little bit every day. I just want him to feel better. That's all. Please make him better.

The good news is that we have found some medical papers concerning Topical Steroid Addiction written by a dermatologist in the UK. Its a great find, because hopefully we can talk this through with Josh's dermatologist and get some treatment that does not involve steroids. Josh has seen many dermatologists and a lot of the time they are just not interested in hearing what has been happening. Especially if it involves the words 'it doesn't work' or 'we'd like to try something else'. They just send us away with stronger steroid creams and we go back to the vicious cycle. We put it on, his skin clears up. A week later we go back to the doctor and they are happy and tell us to keep putting it on. We keep putting it on and very gradually it stops working and his skin is worse then when we started - we go back to the doctors say that its not working and more steroid cream is prescribed. Its a never ending cycle.

His skin looks as though its healing up a bit :-

We got some sea, sun (surprisingly), sand and some homeopathy treatment. All we need now is an understanding dermatologist and we'll be all set.

2 months in...

Josh came off topical steroids in January due to a suspected allergy. The last 2 months have been especially trying but we are holding on to the hope that this will be the worst it gets. It will only get better from here on in.

The whole family is currently on the GAPS diet. We haven't been following the introduction yet, as we don't have all the fermented foods ready yet, but hopefully in April we will be able to go through the stages. For now we are doing the best we can on it. We had some mushroom soup, made with bone broth and mackerel this morning. Later I will be cooking up some fish stock. Josh is home today as his face has been particularly bad. We are gathering his work from school, so he doesn't miss out on anything.

Keeping the family spirits up has been challenging. I have turned into the family jester I think. Family games on the wii have cheered us all up.

Here is a photo of his skin today:

07/03/2014

 

 

 

 

 

 

 

I'm going to post a few photos up every few months or so and hopefully we should see some improvements. The good news is that his skin in other areas are improving and a lot softer:-

07/03/2014

07/03/2014

 

His hands have shown a dramatic improvement. A lot less scaly, red and much softer. His wrists are improving too. This is without putting moisturizers on the skin but from increasing healthy fats in the diet.

More good news is that we have seen no reactions to some of his previous allergens which I will give more detail on soon. We will be testing him with egg white, butter and yogurt next and hopefully these will be negative too. Fingers crossed.