Product Reviews (no Photos)

A list of items we have used during TSW. Josh has given the pros and cons to each. These are his experiences of how these items affected him and his skin.

 

Vaseline (Petroleum Jelly)

Pros-

• Loosens tight skin
• Reduces itchiness
• Lasts for whole day

Cons-

• Not helpful early in TSW, stung
• Greasy

Vitamin D

Pros-

• Heals up ooze
• Stops stinging
• Clears eczema

Cons-

• Risk of overdose, must limit amount to apply
• Difficult to find in gel capsule form for topical use
• A little greasy
• Doesn't always work with big flares

Turmeric (mixed with olive oil or vaseline)

Pros-

•  Calms inflammation, seems to clear eczema
• Helps with itchiness

Cons-

• Stains for 24 hours
• Is a spice, risk of reaction - limited use.

Olive Oil

Pros-

•  Starts feeling less sore through the day

Cons-

• Heats the skin at application
• Stings when applying

Dr Fukuya's Skin Repair

Pros-

• Cooling to the skin

Cons-

• Too painful to apply to much of the open skin. Have not used since.

Dead Sea Salt (Bath)

Pros-

• None

Cons-

• Too painful

Epsom Salt (Bath)

Pros-

• Stopped itching when Josh was a baby
• Seemed to stop itching during TSW

Cons-

• If not dissolved properly it can sting

Ice Packs

Pros-

• None

Cons-

• Never felt cold enough, sometimes felt hot (possibly due to nerve issues)

Fan (Handheld & Freestanding)

Pros-

• Cooled skin
• Reduced itchiness

Cons-

• Noisy

Sunlight

Pros-

• Cleared up skin
• Reduced itchiness

Cons-

• None

Skin Massager

Pros-

• Used in place of rubbing or scratching

Cons-

• Noisy
• Not to hand (too itchy to get out of pocket or drawer)
• Battery powered (didn't last very long)

GAPS Diet

Pros-

• Softened skin
• Delicious recipes

Con-

• Too many sensitivities to continue with diet. It starts out quite restrictive but new foods are gradually added. This became a problem because TSW flares can mask reactions - so we were unable to introduce new foods making it very difficult to stick to. We will resume once TSW clears.

9 Months in...

Over the last couple of months Josh has been quite ill with a respiratory infection. During this time we were offered both oral steroids and antibiotics. We did not know what to do, he was unable to breath and awoke several times a night with asthma attacks. We decide against the oral steroids and used the antibiotics, hoping this would clear it. After another visit to the hospital we were told that steroids were no longer needed, but he was not completely cleared up.

We made a difficult decision and decided that he would resume using his steroid inhaler 2x a day. His cough went pretty much immediately and he didn't need his blue inhaler as much. I have read that other TSW sufferers have not experienced negative reactions to the brown inhaler - but whatever we believe I think it is too much to withdraw from both topical and inhaled steroids and might not even be necessary. Once TSW is over, we may find that his asthma is much less anyway and we can gradually reduce the brown inhalers.

Josh has also unfortunately suffered another flare during this time. His face was oozing around both cheeks and eyebrows and he had sore itchy patches develop on his arms, ankles, chest, neck and back. This is the first time Josh has had what I would describe as a full body flare. I am very thankful for this - as it looks like it has been a terrible ordeal for those that have suffered all over.

The past week Josh's skin has settled, his arms and ankles still need plenty of time to heal.

We are not too far away from a year, woohoo! Hope everyone is doing great!

6 Months in...

So we have reached a major milestone. 6 Months!

It has been a roller coaster of a ride, emotionally, physically, spiritually. One of the hardest things is watching a loved one suffer without really being able to help. But we have made it this far and it is a miracle. I am so proud of Josh right now, he is an amazing young man. This hasn't really been 6 months of suffering for him, but 10 years of suffering. He has always been itchy, its all he has ever known. Yes, this past few months of TSW has been especially trying, but we realize that he has been through TSW once before when he was 2 years old. We just didn't know what it was at the time, or that the steroids had caused it.

When he was 2 we went through an elimination diet to find allergens. We had to stop the creams and anti-histamines to do this. He very gradually got better and he had acute reactions to many foods which we cut out of his diet. It took 2 years before we saw nearly complete improvement. He was well until he started school, where he was in contact with a lot of airborne allergens. He had patches of eczema on his face which we were not at all worried about. It was minor.

However, Josh had quite a nasty reaction to a new food I introduced and he had an emergency visit to the doctors. We did not know it was an allergic reaction at the time and the doctors were more concerned about treating his eczema than his asthma and stomach cramping. My husband flatly refused steroid creams and the doctor alerted health visitors to check us out. It scared both me and my husband enough that we gave in to the steroid creams. His skin got progressively worse until January, when we decided that enough was enough. I am so angry that we were bullied into using steroid creams again and he has had to suffer so badly. At least we know now.

On to the photos! This is Josh at the beginning of this month. His skin has had a few flares but the itching has declined a little.

Here are some recent photos of Josh, taken yesterday - he has recovered from the last flare - there are dry patches but most of the oozing has gone.

Here's his calendar:

Lots more green days! I hope everyone is doing well!

Take Care!

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!

4 months in...

We are well past the 4 month mark now. Sorry for not posting earlier, things have busy! Josh is sporadically back at school, he is doing his best with keeping on top of homework. He's having a few rough nights, not being able to sleep due to itchiness, especially in the recent hot weather.

He's taken up the drums! He likes having an instrument to play, the violin got left behind a long time ago with his attention span being particularly short due to itching. He finds it very difficult to concentrate on complex tasks. With the drums he's finally able to play music. He's been playing along with Dad and thoroughly enjoying himself. Its about time too!

After reading up on Tracy Scarpulla's blog, we've started Josh on a gentle course of active B vitamins and some sporadic use of Dr Fukuya's Skin Repair lotion. We think it has helped so far.

Here are some photos of Josh at the beginning of the May (sorry about the quality):

And here are some photos about a week ago, after adding B vitamins and the occasional use of the Skin Repair lotion:

We think there has been quite an improvement - although its hard to tell from these photos, hopefully by the end of next month the improvement will be quite marked. He is still very itchy and this has not died down much. Here's his calendar from April:

The pink days are when he has been extremely itchy, orange days are when he's been itchy most of the day and green are days when he's been only itchy occasionally. We are hoping for more green days in the future!

3 Months in...

We're now 3 months in and lots has happened. Towards the end of March Josh's skin really improved a lot, it was looking great, although he was still very itchy. Here are a few photos from then:-

Things were looking up until he started to get incredibly itchy around the last week of March into the beginning of April. He was waking up every 2 hours to scratch and he was home from school again. It was constant and we were really struggling. Nothing seemed to help him. Fanning his skin, cool packs, Dead Sea salt baths, nothing worked We stopped using oils on his skin (olive oil) and with all the stress we were just unable to keep up with the fermented foods and bone broth required by the gaps and we ran out of mineral water. Our diet has been mainly meat, vegetables, fruits and some occasional nuts. His skin has worsened during this time:-

His skin isn't as red as before and the oozing has reduced a lot.

Something happened a couple of days ago, though. He stopped patting (he usually pats, instead of scratches as he tries the limit the damage scratching can do). He slept through the night (yea, total miracle!) Daytime was uneventful. Last night he woke once for around 5-15 minutes to pat and then went back to sleep. Today has also been itch free. I'm not sure what's happened. Whether our prayers have been answered or whether it was something to do with the diet, the oils or just a lull in his healing. We are not sure yet. Even though his skin looks bad he's been content these past couple of days, perhaps the itch monster went away for Easter holidays??? Lets hope he doesn't come back!!

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.