Eczema, really need help

[eczperts]

My 1 year old has such bad eczema, I'm having such a difficult time trying to help him. It is severe, covering his face, stomach and back and then patches on arms and legs too but smaller and more manageable.

We've been prescribed hydrocortisone, wasn't helping, then eumavate which did help but after weaning off it the eczema returns. We use epaderm ointment about 6 times a day all over him. We keep his nails so short but he still manages to do so much damage to himself and now has to sleep with scratch sleeves to cover his hands. His face breaks my heart, I feel like I haven't seen my boys actual face in a while as it's just covered in eczema, with little to no relief as we can't do the steroids on his face. I did out of desperation do the hydrocortisone on his face for 7 days and saw a slight improvement but after how much they stressed not to do it I didn't want to risk it especially as the improvement was so slight. We use no fabric softener anymore, we used the comfort pure sensitive skin one before that, I haven't noticed any difference since switching to none. We were bathing him in dermol 600, now just water. We've been warned against emollients, saying they don't work (from the GP)

I burst into tears last time I was there and they did a dermatologist referral to get me out of there I think, but advised it'll be a long wait. I asked about cutting out dairy as it's the main thing I'm reading online and they said not to until I've seen the specialist.

Do I just give it a go? He's so unhappy and itchy and I want to make him better so badly. I read threads online of all these different creams and emollients and I'm happy to buy them all and try but is there a point without knowing the cause? Will it always come back if something is triggering it?

I just feel like not an hour goes by where I'm not thinking about his eczema and how to help him. It's relentless

Thank you for sharing this I would never have known this! I think my little one is already experiencing withdrawal anyway from the smoking of times we’ve been on steroids prescribed by the GP. Creams work great, then it comes back worse.

Sorry to hear about your daughter. can I ask what you have used as an alternative?

@Dahliasings91 I'm sorry to hear this. My daughter is now 19 and only uses Cetraben cream. She is so much better now and hasn't touched steroids for a year and a half. As you can imagine, this is so liberating after a lifetime of steroid creams of increasing strength. I wish I had known about TSW when she was younger, and it is shocking how so many medical professionals are unaware of TSW (though thankfully that is changing). My first reaction on hearing about TSW a few years ago was that it was a bunch of alternative health freaks, then even when I accepted it was a real condition, I was convinced by the doctors that it was very rare and frankly I wanted to believe them because it is so scary seeing photos of people going through it. It was my daughter herself who ended up reading about it age 17 and just knew her symptoms were classic TSW and decided to stop steroids cold turkey. I found the best source of information from the Facebook group ITSAN. There's also one specifically for parents called TSW caregivers rock. Also a couple of Instagram accounts were brilliant: carasnextchapter and drruthskinjourney. The latter is a GP who went through TSW herself and now has a baby.

We only used Dr Aron's cream for a short amount of time to see a complete cure but yes worth doing the research on longer term use.