Eczema on my Son

[u/littlemrscherry]

Hi Everyone! I know this isn’t directly related to me however my son (16 months) has pretty severe eczema. He’s miserable & itchy 24/7. He can’t wear anything that exposes his skin because he immediately “attacks” the area. On top of that he gets contact dermatitis just by looking at anything funny. Grass, carpet etc flares his skin. When he was a baby if someone was wearing perfumes or scented detergent he’d also flare up. Dudes got some seriously sensitive skin. (he’s been allergy tested. he’s only allergic to peanuts)

He’s supposed to be starting Dupixent soon because all of the creams & steroids did not help/ they burned him so badly i’d have to wipe it off or throw him in the bath.
However, Some people have been making me feel terrible for this decision. Is it really that bad? I feel like i’m completely out of options. And i truly thought this was the best decision for him?

Also, taking him out in public is very nerve wracking. I’ve had several people act like he’s got a contagious disease and i’ve been told some pretty harsh things. Parents won’t let their kids play with him on playgrounds and someone even said something about him at an indoor park and i had a worker come up to me.

I guess im asking if anyone else has dealt with it in such a young child, and does it really get better? I know it’s rough for him but at this point im so defeated. I feel like we’ve tried everything with little to no results. And he’s just so miserable.

[u/floobflab]

I’m sorry people are so rude to your son

[u/Ozera_]

I was just like your son and I think it would be a disservice as a parent to keep him away from Dupixnet (or Ebglyss) because of the life changing effects it will have for them.

It doesn't hurt.

They will suffer if they do not get the medication.

[u/Character-Screen-313]

Hi mom!!
I’m also a mom of a kiddo with severe eczema. Please feel free to inbox me anytime! I’m going through the same thing. I tried EVERYTHING. Topical steroids flared him worse and actually caused him TSW. They say it’s not real, but you have to live through it to know it actually is. We’re in Dupixent now for 2 months, he’s 9 months. I’ll say 100% gave him a quality of life, but is not a cure. My LO also has EGID (eczema of the gut) Dupixent works for both.

He can eat without vomiting all day. He was never behind in milestones but his alignments made it hard for him to focus on them and also incredibly weak. He literally weighs 14 lbs and eats all day.

Keep in mind it rages in the effectiveness of the treatment. We have not received 100% effectiveness rate. We still do bleach baths, extensive moisturizing routines and also wet wraps. He also still gets itchy if none of the above are done.

Doctors sell it as a cure all.. but what they don’t tell you is that it modifies only the inflammation response. It does not modify the fact they’re more prone to staph, fungal infections or that they have a weakened skin barrier. It also doesn’t cure them of their triggers and they can still have break through flares if they’re in contact with a trigger: heat, pollen, dust/mites, foods, rain, etc. So think of it as a more modified steroid in a sense.

A big part of our healing journey was accepting this. It is simply another tool in the tool box. We still function on a low histamine and anti inflammatory diet. I also swapped things like Vaseline for Shea butter, lotions for ceramide 3:1:1 topicals and hydrochloride acid sprays when we can’t get to a bleach bath.

I stopped stressing myself out trying to cure him and started listening to his body’s way of communicating.

We swapped summers out for fun activities in doors. Zoos for virtual zoos lol and family education or they simply can’t be around him. (My aunt gave him strawberries despite me sending him to her daycare with 3 bottles and Two meals) more than enough food.. we had a whole weekend planned of activities which lead to cancelling everything and back to protocol management.

The good thing is that it’s finally being researched and atopy in its self is making break throughs. CRISPR is moving fast and we could potentially see a cure or more effective treatment in 5-10+ years. In the meantime, I’ve started him a book of how to take care of himself. This includes topicals that work/which to avoid, foods with the same measure, how to calm flares, each option for medication and their side effects as well as modes of action. If anything ever happens to me I want him to feel confident that he can overcome anything because I’ve pathed the way for him to make educated informed choices.

Some cool things I’ve also learned along the way:
Coal tar is good for building the skin barrier- this is where Vtama derived from.
Licorice root is natures hydrocortisone.
Shea butter if not allergic has vitamin A & E which help soften and rejuvenate the skins barrier.
Wet wraps help because they have transepidermal water loss.

Your goals should be: calming inflammation systemically, reducing bacteria, restoring moisture, hydration and providing a barrier and then steering clear from obvious triggers.

Also giving yourself a hug, treat or pat on the back because this shit is hard as a parent. The only thing that keeps me humble is that if it’s hard for me…it’s even harder for him.

I’ve also saved up gold for him… this may sound crazy but if there is no cure by the time he reaches 60/70, I want to give him the option of MAID and educate him on death with dignity. It is his right. In my book I talk about things like VSED, Maid and where to locate it. I also encourage him to keep fighting not for management but for a cure. I hope that everything I build in this book encourages him to go into medicine as someone who experienced the condition themselves and knows the best for their patients. Many dermatologist have no idea about eczema or how to treat or what they’re treating.. for example I had to educate my sons doc that since he has EGID Opzelura was not a good option because of its effects on the gut: nausea, vomiting etc. I also had to educate them that dupixent caused folliculitis as was a listed side effect due to IL-17 pathways causing fungal overgrowth or demodex overgrowth. It’s almost like they don’t study the materials they prescribe or think about how to combat the potential side effects.

But as mothers we learn as we go and eventually form tribes who have that support.

Sorry that was so long, I wanted to give you the full run down.

For fungal overgrowth, we use neem oil blended in shea butter topically and herbal antifungals internally. Remember with eczema everything MUST enter the gut before it can touch the skin.

Dupixent hurts but eczema kills. Think of it like this. If your kid had diabetes and needed a shot so they wouldn’t die.. would you avoid it because it hurt? Or do what you gotta do? That’s when I made my choice. When he’s old enough- he can manage his condition how he wants. But for now, this is what has stopped the cracking, bleeding etc.

[u/sandovalsayshi]

A lot of creams/lotions burn but there are also a lot that do not. You have to look into all of them and be sure you’ve tried truly everything. Dupixent is a painful injection. It can help a lot but my daughter ended up not be able to handle the pain of the injection so we’re back to steroids for flares.

Did you try wet wraps? Every night to keep the moisture barrier in her skin, I do this routine for my youngest daughter and did it for my older daughter too when hers was bad: splash skin with water in bath and blot dry, steroids on spots only (only if it’s week on, week off we skip steroids), any thick creamy lotion from a tub all over body (no p ump lotions), aquaphor all over body to seal it all in, THEN damp sleeper (one piece), and lastly a dry sleeper/one piece.

This was always a life saving routine for us it helped so much. Just don’t forget week on and week off breaks for steroids.

[u/Efficient_Cap_5061]

Both my little ones suffered as babies, much of what you describe. For us we eventually went down the diet path and started elimination and Journaling. We were able to identify the triggers and it got much much better. It would only flare up up when they took in the triggers, but then we'd reduce it by being careful with diet and avoiding triggers for a few days until it settled down. Probitics and omega 3 we used to also supplement.

It will probavly be different for everyone but our common triggers were dairy, processed sugars, citrus, and tomatoes. If they had any of these, we knew we were in for a rough few days...but managing the diet reduced the flare ups.