08/05/2025
To others this may seem not that big of a deal, but for us as a family, we are so delighted after an absolute hell of a journey, noah has hit some big milestones, not only did he wear shorts last week and this week (and not touch his skin), but a couple of days ago we introduced a little pool, and he can now enjoy water play.
This time last year was a very different story, it was an absolute screeching session to try and wash him, the tears not only came from him, but I would break down, I did my best to hide it, but seeing him in such a state was so difficult. He had to be covered in tubular bandages, and tape his ankles to try and stop him tearing his skin, up until a couple of months ago. He was not able to go to the pool last year, we made one attempt and it was a nightmare.
Not many are aware of the horrors of topical steroid withdrawal, it's more or less not acknowledged in the medical field, you are basically dismissed, but I knew in my gut, as much as we at times felt like giving up and using steroids again, we had to fight for Noah.
We can finally see the light, and are getting alot more sleep, we arnt panicking if we don't see him for more then a minute. So if I take one positive from this journey, it will be to help others suffering TSW
I will post the previous story in comment for those who are not familiar with Noah's story, and to spread awareness.
Emma x