Luca’s Eczema

There is so much to say about this topic that I don’t even know where to begin. If you follow me on social media, chances are you are well aware that my 8-month old son, Luca King, has severe eczema. He was born with clear skin, besides a small stork mark on the back of his head, a red pinky on his right hand, and a slightly red left eyelid. These were just minor, barely noticeable marks. Otherwise his skin was soft, smooth, and yummy. 

Newborn Luca

Newborn Luca

IMG_7385.JPG

When little Luca was almost 3-months old, around Christmas time, he started to get some mild eczema on his forehead. It was just a little bumpy at first, but then it got worse rapidly, over a few days. It spread and became red. I asked for eczema tips on my Instagram stories and literally received over 100 responses, many of which were contradictory to one another, so I felt a little overwhelmed. At this point I wasn’t too stressed, I figured I would try a few of the recommendations, like switching up laundry detergents and applying a few different creams. Some of the creams that people absolutely swear by did improve Luca’s skin for a couple of days (at which point I felt a tremendous amount of relief), but then they would stop working and the eczema would return.

Dec 23- The first bit of mild eczema

Dec 23- The first bit of mild eczema

No matter what I tried, the eczema just kept getting worse and spreading to new areas. I had absolutely no experience with eczema and didn’t know anything about it. After about a week of this, I made an appointment with a family physician. She prescribed 0.1% Hydrocortisone cream and recommended moisturizing frequently. I went to pick up the steroid cream and shared this on my story. I immediately received DM responses (from people I don’t know personally) to NOT apply steroid cream to a baby. Like I said, I was totally clueless when it came to this skin condition and I generally like to minimize my use of medications, so I decided I would try a few more natural remedies before using the Hydrocortisone. 

Dec 27- eczema progression

Dec 27- eczema progression

Needless to say, things went downhill quickly and Luca’s poor skin was getting more red, inflamed, and he was getting more itchy and uncomfortable. This is when I started to realize nothing was working and began to worry. I decided to give the over the counter steroid cream a try. Again, this worked like a charm for a few days and I felt relief. Then, once again, the eczema came back, this time worse. 

Dec 30- improvement after Tubby Todd cream

Dec 30- improvement after Tubby Todd cream

The advice I was receiving was appreciated but was making me feel anxious. I decided to request a referral to see a dermatologist in January. When we went to see the dermatologist for the first time I learned a great deal about Luca’s condition. There are several different types of eczema and Luca’s is a genetic type called Atopic Dermatitis. It is very different than when a person has an itchy patch of eczema from time to time and should not be compared to that.  Our very experienced derm explained it as an autoimmune condition; Luca’s immune system over-reacts to irritants he is exposed to (like things in the environment, polyester fabrics, pets, dust, dander, weather, food, etc.) and it manifests as eczema. Everyone is different so it is next to impossible to figure out exactly what irritants affect Luca. He told us we will likely drive ourselves crazy trying to determine what is irritating him but over time we may be able to figure some of them out. Until then, it is just a matter of waiting until Luca outgrows his eczema. He couldn’t give us a typical age that this happens, but from my research it is around age 5. Children who have this type of eczema are more likely to have allergies and asthma.  The specialist said the eczema needs to be treated with steroids, daily baths, moisturizing (he recommended Vaseline), and antihistamines. He prescribed a stronger steroid (Desonide ointment) and recommended giving Benadryl nightly to control itching and help him sleep. We booked a follow-up appointment for in a few weeks and he sent us on our way. 

Jan 17- Continuing to worsen

Jan 17- Continuing to worsen

Even though the steroid use felt counterintuitive to my typical lifestyle choices, I decided to follow the dermatologist’s recommendations to a T, in hopes that it would help control Luca’s eczema. I applied the Desonide steroid ointment diligently, just as it was prescribed. I also did daily baths as well as bleach baths (1/4 cup of liquid bleach in his bath 3x/week to kill bacteria on the skin), as recommended by the specialist. Old recommendations were to minimize bathing with eczema, thinking it would dry out the skin. Now the recommendation is to bath daily and barely dry off, as the creams are better absorbed into damp skin. 

January 25- up close

January 25- up close

Despite all of this, into February, Luca’s eczema continued to get worse and worse.  It was a nightmare.  His faced and body were covered in red, itchy patches.  They were constantly ‘weeping’ and oozing.  If he rubbed them at all, he would bleed.  Then the patches would crust over and the cycle would repeat itself.   Every morning his sleepers and sheets were covered in blood and would need to be washed. He was so uncomfortable, all he wanted to do was breastfeed to comfort himself.  It’s the only way I could get him to sleep.  When I tried to detach myself from him, he would scream and wake immediately.  At this point, I had to lay beside him at all times to get him to sleep at all.  I would just lay there and cry.  I would research eczema on my phone for hours and hours, driving myself crazy.  My heart would pound as I read something new that I thought may be the cause or the cure. I was determined to figure this out and make it go away.  I would wake up in a panic, shine the light from my phone on Luca’s face to check on how it was looking.  I was not sleeping either and was seriously sleep deprived.  Most of the time I felt like a zombie and could burst into tears at any given moment.   I worried about issues with things like bullying, insecurity, self-esteem, and if this condition would change Luca’s personality; would it make him sad, depressed, closed off? 

February 11

February 11

Nothing I was doing was helping.  I just felt so sad for him.  It was totally unfair that an innocent, sweet baby would have to live in a body that made him so uncomfortable.  I felt like he was being robbed of his babyhood.  When I would look into his eyes, I just felt him saying “help me” and I couldn’t.  That was the worst part.  A parent should be able to help their child and I couldn’t.  I started to feel responsible for Luca’s skin issues and to be honest, it was people that were making me feel that way.  (Hopefully) Well-meaning family members, friends, and followers offered advice, often pointing to my breastfeeding as a cause.  Since he was exclusively breastfed, it seemed people assumed that something about my diet or breastmilk was making Luca have eczema.  Many times I was told to try giving him formula and stop breastfeeding him.  Although I have absolutely no issues with formula feeding, I knew in my gut (and from research) that wouldn’t fix the problem.  For over a month in February and March, I attempted to eliminate common allergens from my diet, but felt like I was doing so blindly and it never seemed to improve.  Instead I was just sleep deprived and now starving, which was not a good combination for my mental health.  I blamed myself and wondered if the eczema was caused by my diet in pregnancy, missing my prenatal vitamin here and there, stress, my diet while breastfeeding, or something else I did or didn’t do.

February 14- taken in the middle of the night

February 14- taken in the middle of the night

It was at the point where I did not want to take Luca out in public, because of the reactions I would get.  Not because I wasn’t proud of my beautiful, sweet, baby boy, but because of the stares, the questions, the unwanted advice.  Same with showing him on my social media.  I would get flooded with DMs when I would show Luca with a bad flare (even with a filter).  I know that most of the time, the responses were from a good place but I was in a bad place, so no matter what, they just made me feel worse.  People would say “poor guy”, send a broken heart, crying emoji, send before and after pictures of a success story, make product recommendations, and share viral tips with me.  It just reminded me of the awful condition we were dealing with every minute of every day and I couldn’t escape it.  I felt like screaming “I’VE TRIED EVERYTHING! IF YOU’RE SAD- HOW DO YOU THINK I FEEL AS HIS MOTHER?” But instead I usually said, “Thanks, I’ll give it a shot J” LOL. I basically felt like no one understood what we were going through.  I never even knew a condition this severe existed.  I had prenatal anxiety about something being wrong with the baby, but this was not something I had worried about.  

February 17

February 17

I took Luca to all kinds of healers- a naturopath, a homeopath, and another dermatologist.  I guess to get a second opinion since the first plan of action had failed miserably.  I was such a basket case that I was just sobbing in the dermatologist’s office, begging for help.  She said that Luca’s eczema had become infected and he needed oral antibiotics to get it under control.  She also prescribed a very high potency topical steroid (Mometasone Ointment) to apply to his face and body.  The dermatologist warned me that the pharmacists will not want to fill the prescription for an infant, but to use it anyways.  Long-term or continued use of steroids this strong have a long list of possible risks such as thinning the skin so the veins and capillaries show, stretch marks, hypopigmentation (white spots on the skin), easily bruising, rosacea, weakened immune systems, and stunting growth (2” inches shorter).  Obviously NO ONE would wish to ever have to make a choice whether or not to apply this to their baby. I was constantly weighing the pros and the cons of each decision in my head.  I really felt like I had the weight of the world, or at least of Luca’s health and future on my shoulders.  The words of the first dermatologist were always running through my head “if you choose not to apply the steroid cream, you are being a negligent parent and making him suffer.” 

February 22- the peak. Infected.

February 22- the peak. Infected.

I decided that I would start by just giving the antibiotics, and hope that clearing up the infection would help his skin improve.  Well… that didn’t work at all.  The eczema did not clear up whatsoever, and now we had a baby with severe diarrhea and with blood in his stool.  So, against my better judgment, I applied the high potency steroid (Mometasone). Within a day, his skin cleared up drastically.  He was so much happier and actually smiling.  I was so much happier and actually smiling.  All was good in the world.  I applied it for about 5 days, just as I was instructed to.  Then I went back to the medium potency steroid (Desonide) as part of the weaning process.  Well, let me tell you, all good things must come to an end because when messing around with strong steroids, there is something called ‘rebounding.’  So Luca’s skin looked good for a few days, then it was slowly getting worse.  I kept noticing it and pointing it out to my family but they were trying to reassure me it wasn’t.  I knew better.  After a few days, his skin was worse than when we had started the strong steroid.  It was showing up in new places, like all around the sides of his head, where it had never been previously.  The only way to make it go away would be to use the Mometasone steroid again, but there are so many risks of continued use.  Plus, it’s a vicious cycle and Luca would become steroid dependent.  

February 27- after 1 day of Mometasone

February 27- after 1 day of Mometasone

Through trial and error, in April I slowly weaned Luca off of the strong steroids. His skin was getting slightly more under control, but it was still severe eczema.  Just not as shockingly out of control.  We went back to see our first dermatologist and he recommended going back to the first medium potency steroid (Desonide) and believed that would make his skin improve more.  Being the good student I’ve always been, I followed the plan once more.  And this time, I noticed right away.  THIS GOD DAMN STEROID WAS MAKING IT WORSE!!  I suspected it before but told myself that wasn’t possible.  Now that his skin was a little bit under control, I was able to tell that as soon as I applied the Desonide steroid his entire body turned bright red, poor Luca screamed bloody murder, and the eczema worsened.  I took before and after photos as evidence and immediately made a follow up appointment. I was ready for a fight with the doctor but instead when I explained myself, he agreed that was likely what happened.  It’s not common but it happens.  No fight needed.  He prescribed a different steroid that is similar in strength (Hyrdroval ointment) and also recommended Hydrocortisone for good days, and Protopic (a non-steroid prescription immuno suppressant) for maintenance.  

March 9- the rebound after stopping Mometasone

March 9- the rebound after stopping Mometasone

Given our poor experience with steroids and reading some fear mongering articles about Topical Steroid Withdrawal, I decided to try weaning to just the Hydrocortisone and Protopic.  It was around this same time that I felt a shift in my mood, mental health, and attitude towards this whole eczema journey.  I just made peace with it.  I came to terms with the fact that nothing I did caused it, and in turn, nothing I could do would really make it go away.  I stopped trying to find the cause and the cure for it and just decided to make the best of it.  It’s no coincidence that at this same time, I also moved Luca out of our bed where no one was getting any sleep, and moved him into his own crib.  It was tough for both of us at first, but sleep is so important and slowly but surely it improved (I use that term lightly- it went from waking several times an hour, to waking every 3 hours, but a win is a win).  

March 12

March 12

On the first of May, I took Luca for allergy testing.  He had skin prick testing of 8 common food allergens, as well as some foods I was suspicious of.  Because of all the pain Luca has experienced due to eczema, this testing was nothing for him.  He’s such a trooper.  He immediately showed large reactions to dairy, eggs, and peanuts- meaning he is allergic to those foods.  The research around how these allergies contribute to eczema is divergent, as is how to manage them (introducing the allergens or not, when to, etc.).  The allergist recommended removing the allergens from my diet (as I’m breastfeeding) and not giving them at all to Luca directly.  He also said that if after a few weeks there is no improvement in Luca’s eczema, I could reintroduce the allergens into my diet. 

April 30- slowly improving

April 30- slowly improving

As we processed the diagnosis of the allergies and learned how to use an epi-pen for a probable anaphylactic peanut allergy, I felt overwhelmed, sad, and worried about his present and future.  All the news stories of deaths from peanut contact came to my mind.  But at the same time, I also felt hope. Hopeful that perhaps this is another piece to solving the puzzle that is Luca’s eczema.  

May 1- Allergy testing

May 1- Allergy testing

IMAGE.JPG

Over the next three weeks, which brings us to the present day, Luca’s skin slowly improved each day.  In fact, last week I would say his eczema was 85% improved!  The areas of eczema are getting smaller and smaller, and some are disappearing.  The severity of the patches are getting less and less.  We are not using any steroids and haven’t for about 6 weeks, and honestly, I don’t feel the need for them.  He is still having flare ups, but they last for a much shorter time (1-2 days) and are much less severe.  

May 7- continuing to improve

May 7- continuing to improve

It is almost impossible to determine what exactlyis making Luca’s skin improve.  My best guess is removing the allergens from my diet, but it could also be him growing out of it, the probiotics, the humidifier and air purifier, removing all polyester from his wardrobe, the Vanicream moisturizer, or a combination of all of the above.  If you want easy access to a list of the products that I believe help Luca’s eczema, I’ve linked everything here.  I’ve spent thousands of dollars (literally) on products to help Luca (from cleanses, to vitamins, supplements, creams, ointments, salves, oils, balms, cleansers, drops, and more) and I’m only sharing a few products worth trying. Hopefully I can save someone some money. 

May 20- So much better!

May 20- So much better!

Just to be clear, I am not against steroid use.  They definitely have a time and place, and work brilliantly for many people. Unfortunately, they weren’t the answer for Luca.  I do believe steroids are overprescribed in some cases and that there is a lot of fear mongering out there surrounding them.  My best advice is to do your research, find doctors you trust, follow your gut, and use trial and error until you figure out what works for you.

 I know that Luca’s eczema isn’t completely gone, and we likely still have a long journey ahead of us with it coming and going but right now it’s manageable.  For a while I wouldn’t allow myself to get my hopes up but now I’m celebrating this victory.  I’ve had this blog post in my head since the beginning, and have had requests for it, but right now is the first time I’ve felt in a place to talk about it. Thanks for listening.

And PS, now that I’m not in such a negative headspace about this, I’m cool with the messages about Luca’s eczema so don’t be shy to reach out!

 Xo Kk