We Beat It!!

Josh is 98-100% better 3 1/2 years from quitting steroid use. He still gets the odd mild flare which causes dry skin and he copes with this by using a moisturiser. He still gets the occasionally itchiness but none of the deep excruciating bone itch that he described in the early stages. He has increased his food choices and can eat a variety of foods he wasn't able to consume. He has even had milk without reaction. We believe his allergies may have subsided along with his TSW. We need to get this first confirmed with a doctor so that we may post back again to confirm whether his allergies have truly gone.

Photo Bottom Left = Mar 2014, Bottom Right = Apr 2014, Top Left = June 2014, Top Right = Aug 2016

He passed his grade 5 drums and is currently studying for grade 6. Drumming really helped with distracting from his itchiness and now he loves it. He is also getting on with school and has coped well with secondary school. He suffered bullying at the beginning - he was called "scabby" which hurt his feelings. Now his skin has subsided and he has gained confidence, he can cope with any nastiness.

It will probably take another year or two before his skin is 100% - but I'm not sure how long it will take for him to heal emotionally, and whether this episode has caused him lasting emotional damage. Time will tell. If I was stronger, and richer I could pursue this with the NHS and drug companies but I am not - I would prefer that we get on with our lives. We would certainly do our bit to help others but bottom line is TSW sufferers and their families are exhausted. Exhausted from lack of medical help, exhausted from lack of support, lack of belief. We need outside help. I hope that someone strong enough can take on this problem and win because we will be there to help and support.

If anything, more should be done for people who suffer severe side effects from the use of prescribed drugs - I wish there were an independent support system with private doctors who are willing to listen to patients with conditions that are not helped by medication and those that believe their medication may even be making them worse. So often people are told they are imagining their problems - they are not listened to or taken seriously. Just the act of listening can heal.

Months 10 - 15

We haven't been posting as family life has gotten rather hectic! However, we have still been keeping record of Josh's progress.

Eventually I will post a quick view page where you can see photos of each month and the progression of his withdrawal.

Josh has been fine - he has had a few mini flares. The 13th month has been the biggest and has lasted into the 15th month. It's quite disheartening after he has been doing so well, but we are hoping that when the sun comes out his skin will improve greatly. Josh has not had any re-occurrence of asthma and he has gradually stopped taking the brown and blue inhalers. He has taken the blue very rarely, however we won't hesitate to return to the inhalers if he needs it.

Month 10:

Month 11:

Month 12:

Month 13 & 14, This is when flare started:

 Month 15, up to date:

 The flare certainly isn't as bad as previous early flares, but it has extended quite far around the body which is a lot like previous flares. We are hoping this will the last bad one. I hope that you are all improving and feeling better each day.

Take care!

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!