My daughter will personally write the journey as she went through this mentally and emotionally. I will not be able to describe her overwhelming struggle, pain, itchiness, better than she is able to.
Therefore, I will only post photos of her progress and maybe information that might be useful for others We just hope that others will not suffer from the side effects of steroids, protopics and other immunosuppressants.
Dermatologists that we've visited misdiagnosed it as severe eczema and infection due to her shivering. They suggested admitting her to the hospital as she might have sepsis which is life-threatening. One of them even said that he had never seen someone in worse condition than my daughter. Too bad we didn't know earlier that shivering is common in TSW as the body unable to thermoregulate body temperature.
After 3 days of heavily applied with steroid, she was prescribed
with more steroid when discharged from hospital on 1 Aug 2019.
After her discharge, her condition quickly worsened as we tried not to use steroid as prescribed and started her on Dupilumab injection from 19 Aug 2019 to Dec 2019 as it's not effective on her and had side effects on eyes and caused hair loss.
Coincidentally, my daughter went cold turkey for steroid and moisturizer
a year after her hospitalization on 2 Aug 2020.
she stepped out of the house for the first time to visit Whitesands.
She still felt pain when the wind blew and easily tired even from a short walk.
We try to follow NMT (No Moisturizing Treatment) by Dr. Sato although not that strict on water intake of 1L per day which helps to reduce oozing and dry up the skin (which is very effective). Please check Tokuko's blog for more information on NMT procedures as she translated it from Japanese to English.
We'd stopped High Pulse Blue Laser too as it's very expensive (more than my monthly salary). We couldn't judge how much it helped. However, we're thankful as Dr. Jay was very experienced, he's very sincere and caring his patients and explained to us in detail everything that we need to know about TSW.
When I asked her what she wanted for Christmas around 2 weeks ago, she said that obviously her baby skin. But, she knows that won't happen in such a short period. Therefore, she's tearing while saying hopefully she'll have 75% clear skin on her coming birthday in Feb 2021 so she can go to school. Praying hard that her wish will come true~!
You are such a strong girl, ciecie. You will get thru this victorious and tougher than ever. We love you 🙏🙏❤
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