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!