Wednesday, 9 September 2020

Is it Eczema or TSW?!

Today is my birthday, but we will just have a simple cake to celebrate. Normally we would have a fancy meal but we haven't went out to dine since last December because of Covid 19. 

This birthday definitely unforgettable because my daughter is on her TSW 5 weeks. My son suddenly grew taller than me when he woke up 3 days ago and complained that his neck was painful and I saw that his neck was longer! 

Anyway, I'm grateful to have a brave daughter who even told me to not blame myself, doctors, or anyone else for her skin condition. 

You must be asking what is TSW?!! 

HELL!!! Yes, it's the hellish Topical Steroid Withdrawal. I found out about TSW after reading this article "26-year-old S’porean woman living with rare skin condition: I thought it was ‘severe eczema’"

All the symptoms matched exactly with my daughter's condition. I asked my daughter to read it, and we decided not to apply steroid from 2 Aug 2020. Actually, we tried not to use much steroid and kept asking doctors to not give steroids as what I knew it'll make the skin thinner, but didn't know that it'll lead to Red Skin Syndrome (RSS) and all the complications.

   

 These are all the medicines that she applied on different parts of her body.

My daughter said that she's thanking herself for being lazy to apply the medicines and moisturizer, which indirectly saved her skin! 

From the above photos, you can see Protopic which is not steroid. Please don't use it too as the side effect is even worse than steroid. We didn't know and thought that it's a good alternative.

She was admitted to hospital on 28 Jul last year. Dermatologist suggested to admit as the eczema flared up to her whole body and afraid that she might have sepsis due to infections. Although she didn't want to be admitted, but we forced her as her conditions were getting worsen. Amazing to see her back to the normal person and her skin perfectly cured in just 3 days! She even took the longest bath of 45 minutes and had to stop after found out that it's flooding outside her ward!!!


Nurse buttered her with steroid and thick moisturizer which made her whole body shinning!

To be frank, we were really relieved to see that she could sing instead of scream in the bathroom! 

So is steroids were amazing? after just 1 month we noticed that her eczema was starting to flare again and we started administering Dupilumab on 2 Oct 2019 and stopped in Dec 2019 because her condition was only controlled for one week after injection and there was noticeable hair loss and reddening of eyes.

By the way, now she goes for High-Pulse Blue Laser treatment weekly at Skin Health Centre. According to the doctor, the withdrawal usually will take 4-8 weeks, followed by a long recovering period. My daughter asked us not to worry about her as her skin will get back to normal soon. She is thankful for all the people praying and wishing for her speedy recovery.

As quoted from Dr Jay, "Stay positive!!!" this is very important because stress is one of the factors that cause skin to worsen.



 TSW Syndrome (Source: ITSAN)

 

I will post more about TSW when my daughter is getting better, as I really have no time as we need to take care of her 24/7 on top of our jobs.

* Feeding her meals, fruits and snacks as she eat double or triple!!! 

From Jing Rui's website we learned about No Moisture Treatment (NMT) to reduce water intake so there won't be too much oozing.

* Toileting 2 - 4x / day and showering 1x / week. 

It's too painful as water stings her so I had to bath her only with water without any shower gel or antiseptic bath gel which was suggested by dermatologists. Another reason is because she fainted twice when I was bathing her, likely due to the pain or sudden weakness.

* Scratching machine

In order not to let her scratch herself too hard, we became machines to gently scratch her as per her instructions.

* Endless cleaning, sweeping / vacuuming at bedroom, living room & bathroom.

We need to wash 2 sets of bedsheets and blankets everyday because she loses large amounts of flaking skin and oozes a smelly substance. I have to wake her up at 7 am and then rest her on the sofa until 7 pm so that I can do my work and take care of her at the same time. My mum helps me with most of these chores. I'm thankful because I can work from home so I could cope with all these issues. 



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 Red Skin Syndrome


Flaking from head to toes.
She asked to shave her hair so it'll be easier to manage and not stick to her neck, ear and skin.

Edema which might last for 3 months.

Fighting for smooth recovery all the warriors!