The little one is beginning to have a routine emerge. So far she fights all forms of sleep training and instead functions on a growing stable sets of principles.
Bedtime is 9pm.
Midnight to 2am is the start range for the late-night meal.
5am-6am is the start range for the early morning meal, but a second attempt at sleeping afterwards will be successful.
6am-8:30am is the relaxed independent wake-up time range where self play is initiated until boredom or some confined position occurs and it’s time to wake up mom.
At the moment, I don’t really mind this schedule, save for experiencing the skin drying out feeling each time I wake up. The apartment has central heating, which equates to forced air from ceiling vents, which feels great but does tend to dry me out especially as I’m up three times each “night” period. I have a moisturizer by my bed (which I’m starting to think every non-moisturizer withdrawing person should do) so every time I get back in it I reapply to all my problem spots (feet and hands primarily, but also knees and elbows).
It’s annoying because we’ve officially hit that time of year where there’s a consistent wetness in the air outside, and temperatures vary from 40 to 14 Fahrenheit. As a result, my skin gets damp and itchy, I’m constantly bundling up to stay warm, and I can’t keep moisturize on my skin to save my life.
But back to Fiona. Last night she fell asleep at 7pm instead of 9pm (which was a feat in itself and aided by the fact that she hadn’t napped since the morning). What was the result? Feedings at 9pm and 3am, and we’ll see where the terminal night feed lands, but I’d guess it will be around 5am now.
I think it’s fascinating that she has her own internal clock developing. She has never been a great sleeper but she is slowly adding hours in like with a late morning nap she eventually takes that lasts from 2 to 3.5 hours. At first I was really frazzled that she didn’t do what all the books and sites say, which was to settle down around 6pm and be asleep by 6:30/7pm consistently, but then I realized it wasn’t helping either of us that I was getting stressed out when no amount of routining could successfully have her asleep before 8pm each night. She also got so inconsolable with our few day stints of attempts to sleep train her, and it would carry on into the next day. When I finally stopped trying to get her on the “normal” schedule, she got happier, so I got happier, so she slept longer, so I slept longer, and my skin started to heal more- winter dryness and all.
That had been a hugely frustrating part of this new baby life. There are so many external pressures to have a baby that conforms to the general standards that society has deemed the norm, that when yours doesn’t, it can be so mentally taxing.
For example, so many of the pediatricians I saw told me Fiona was too small, therefore not eating enough. The newest pediatrician pulled up the growth curve and showed that Fiona was tracking perfectly for a baby in the 5 percentile (aka she is growing consistently, but is a small baby as far as “norms” go). But instead of understanding that for the first 6 or so months, I lived in fear that I wasn’t feeding her enough, but also knowing that I was on the most hypoallergenic diet I could be (no dairy, soy, gluten, eggs, rice, oats, corn) and that breastfeeding reduced her risk of getting eczema. It was a vicious mental gymnastic I had to contend with, with every comment about how small she was, or every assumption that when she cried that she was hungry, really sucker punching me in the gut. It amped my stress levels up so much and so it is little wonder I had stagnant skin healing for months (on top of fluctuations in my amounts of sleep).
But now, though some of the old thoughts still rear their ugly heads, I have found more peace with the situation, especially as I see Fiona make developmental milestones. And subsequently new calmness is helping my lizard skin slowly regain its shine, even if this north east winter is trying its darnest to dry me out.
A while back I wrote a post about what it’s like to have eczema and be pregnant, followed by another post after my little one was born all about living life with eczema and a baby. But today’s topic isn’t about the mom, but rather, about the baby and the baby’s risk of inheriting eczema from his/her parents.
The inspiration for this post comes from the eczema community on instagram. Many ladies have been asking about this topic, so I figured I would try to search for an answer. I apologize if it isn’t the clearest of posts. It’s a culmination of a bunch of witching hour moments over a few days, when Fiona decided that midnight, 1am, 2am, 3am, etc are equally important times to wake up each day.
Most of us know that there is a genetic component to eczema but what does that actually mean? There are a few different ideas being studied about where genes come into play with this condition that are lumped under the “outside-inside model” which look at skin barrier dysfunction (as opposed to the “inside-outside model”, which is about the gut health). Some examples of the outside-inside model, which I’ll go over individually, include:
FLG (a gene, that makes the protein filaggrin). I mentioned this protein in an older post, talking about how there were treatments for eczema being developed that made use of it. The gist was that a loss-of-function in the specific gene results in less filaggrin being made, and filaggrin is an essential player in keeping the skin barrier intact.
Th2 (a cytokine, or a protein that impacts cell signaling). Th stands for T helper cells, and they help with host defense, but also impact inflammation. Some, like Th2 are know for being (pro)inflammatory, while Th1 is known to be anti-inflammatory. I mentioned this a little when talking about pregnancy and eczema. Research from 2015 showed there are many different Th types, that all may have their own impact on inflammation.
interleukin-1 (a protein from a family of inflammatory and regulatory cytokines). Many studies are still showing that breastfeeding reduces your child’s risk of eczema, because of some components (interleukin-beta specifically) in the breast milk that the child consumes. One such study went so far as to say that breastfeeding halves the risk for children between 0 and 3 years of age (and no you don’t have to breastfeed for 3 years for that to be the case!). The way interleukins work is that they are released when there is bacteria or immunological disturbances. The interleukins show up and affect cells like capillary endothelial ones, making them release chemicals and attract monocytes (large white blood cells that help kill bacteria). The problem with these is that certain types can be associated with Th2 (like IL-22 which is made by Th-22), or they can be known to be associated with inflammatory diseases like IL-17.
To be honest, I am still a bit skeptical of the studies done that show no effect because, from what I can tell, they have the parents give the babies probiotics for say 6 months, and then continue to see if there is a benefit at some later date like 2 years of age. If a modern western diet (high carb, especially in refined sugars) can alter an adult’s gut microbiome fairly rapidly, why would the probiotics a baby takes at 6 months still be helping the gut at 2 years (the biome diversity would have changed due to diet by then, and the gut must stay healthy for it to help the skin)? Wouldn’t one expect the gut microbiome diversity to change and said “good” gut bacteria to not be able to survive the environment anymore?
So essentially I am still thinking, as the studies show no negative effects of taking probiotics, after talking with your baby’s pediatrician of course, what would be the harm in giving your baby probiotics? That and making sure to keep your baby on a diet that creates a gut environment more conducive to good bacteria flourishing.
Also note, I wasn’t able to access the whole study so I’m not sure how the probiotics were administered unfortunately. On a tangent, that’s always a frustrating point to me. I don’t think studies should cost the public to access because we should want to encourage people furthering their health in any way possible. I understand scientists need go make money too but I do wish there was another way besides charging subscriptions to databases of research.
But I digress. So what is the takeaway for all those future mamas worrying about passing eczema on to their children? Do they have cause for concern? Perhaps. The way I see it (noting I could be interpreting this incorrectly) is for:
filaggrin: If the loss of function filaggrin gene is passed on, the child would probably have an increased risk.
Th2: the Th1/Th2 dominance seems to be more dependent on estrogen than genetics (though I could be wrong) so my guess would be that having a girl would make her more susceptible in that case (again I definitely could be wrong).
MATT gene: The atopic dermatitis shows up is because of that misstep (mistake) in the common SNP of the gene. As a result I think the answer is yes, it probably is a risk for one’s children, because missteps (I believe) would be passed down since they are mutations.
interleukins: I believe the pro-inflammatory ones that are problematic are a product more so of consistent stressors on the body (both from invaders like bacteria, and from literal stress). If the baby/child is relatively healthy and isn’t too stressed out, in tandem maybe with the mom breastfeeding her baby (so long as she is able to, aka isn’t on chemotherapy or radiation or something), then I do think the risk of eczema from this perspective, is decreased.
But the real question now is how do all these components balance out in an individual, in a baby? Does having a loss of function filaggrin gene guarantee a lifetime of eczema? Or does it just make you more susceptible but you are fine if you don’t have the MATT gene’s SNP misstep (or one of the other 33 SNPs mentioned that are related to eczema susceptibility)? It would be interesting to see a study done that investigates all these components together, so we could know which are still present when you have people with severe eczema, topical steroid withdrawal systems, etc. As for the initial question, sure, there are genetic components that you pass down to your baby, but it seems like not all the heavy hitters are genetic so your baby may still be fine.
One more thing to leave you with: the American Academy of Dermatology made a post a while back saying a few ways to reduce your baby’s chance of eczema (minus genetics naturally), which included:
having a dog at home before the child’s 1st birthday
moisturizing a newborn’s skin
not eliminating a bunch of things in your diet
eating a health diet while pregnant, and
breastfeeding (and having a healthy diet during it too)
All in all, know this: if you do have a baby and he/she has eczema, the research body is growing in the field and more understanding of what causes eczema are coming to light, which means better ways to treat it will follow.
When you’re young you fly on this invisible tether, unaware of the fleeting nature of your adventure, how you will not always be there, balanced confidently but precariously.
I often think back on my journey living with severe eczema and immediately I remember the onset of the first cascade of knocked-me-off-my-feet-and-never-found-solid-ground-again topical steroid withdrawal symptoms and think that was where it all began. But it’s just not true. Even when I was young (under 14), active and energetic, there were moments when eczema was already blossoming under the surface.
I remember hiking the presidential range with my uncle, his girlfriend (now wife), his cousin, an uncle-esque family friend, and my sister. When we reached the last cabin closest to Mount Washington, I recall the cold as a storm rolled in and remembered vividly when I washed my face in a cold bathroom in the morning with chilly water, I felt the creep of a growing itch under my skin.
Nowadays I know that there can be many triggers for eczema including temperature changes, but then, eczema was a weird seasonal rash that showed up only on the insides of my elbows, not on my face. I think my thoughts at the time were something along the lines of “oh, I must have eaten something that was contaminated lightly with peanut fragments”, because in my head, face itching had to be a sign of an allergic reaction.
It’s also non-humorously funny to look back and realize I was already becoming paranoid of food allergies (and sensitivities) as the culprit to my skin woes.
I also recall having (and to some extent still have) the belief that because I possessed any abdominal fat, therein lied the reason I had eczema. It wasn’t yet possible to accept that I wasn’t infinitely healthy and majestic, that my body wasn’t perfect, that I had my own personal dis-ease I would have to reckon with that would change my whole game plan. It was easier to think that I was just eating too much and therefore making myself less than perfect.
It’s interesting because I can still so easily transport back into that mindset and remember how vital I felt, how alive, how healthy. I didn’t feel disappointment that my body had betrayed me yet.
Now don’t get me wrong, I can still get optimistic about my skin’s healing progress and feel I have come a huge way along the path of recovery. But my confidence of almost immortality that I had once before, is not there.
Part of that makes perfect sense. I have grown up and matured, and since realized essential concepts like that my body is no longer growing up, that I have to maintain health by eating right and moving and controlling stress or I will grow outwards in a horizontal direction. I get that. But there is also this, I think what I used to call “the Peter Pan effect” that I recognize is gone. It was akin to the moment I turned 12 and had to firmly accept the idea that I was never getting into Hogwarts, not because it was fictional, but because I had aged out of my chance. I adjusted to change of aging in asymmetry, non-smooth block jumps.
I think that’s the hard part of it all. You have to accept that time moves forward and one day you are on the other end of the growth curve, in what I now like to call the maturation phase, giving in to the adage of us ripening well like rare vintage wines. But it is hard to accept that where you were once full of epiphyseal (growth) plates, you now have the potential for osteoporosis; where hyaline cartilage once ran amok, we now see arthritis. I don’t know, I think sometimes the reality of aging, even if it is done amazingly, is still a bitter reminder that our lives are meaningful because they end, and so it’s important to accept the ride and always strive for better and better days, even if there are road bumps, like severe eczema in my 20s; here’s looking to flawless skin in my 30s!
A long while back I came across this article called From IUDS to IVT – Designing for Women’s Health on medium a while back, by Emilie Lasseron. In a nutshell, she talks about the new innovations in women’s health and how it is important for creators in this realm to be mindful of their audience. Naturally I tried to pattern match this to blend into the eczema realm as well, to combine my two interests/where I’m at in life now.
Lasseron’s big 5 bullet points were to “design:
– for passive engagement”, which was where she explained how we have a culture where we don’t really think about fertility until we start trying. This is similar to what we see with eczema (with eczema being a negative thing that people don’t try but experience). People don’t really think much about it, until it starts to take over and disrupt their way of life.
– for myths, not just the facts”, in which she explained that we have to meet people where they are at, even if that means from a perspective that may be incorrect or grounded in myths. This is huge for eczema. From dispelling the idea that we have contracted some contagion, to explaining that no, coconut will not cure the skin, there are so many “old wives’ tales” and other myths to slog through that when talking to someone new to having eczema, it’s important to be able to calmly and concisely explain the basics and why some of the commonly heard remedies may be wholly ineffective.
– for the conversation women want to have with their doctor”, in which she described creating tools to help women feel comfortable getting their questions out to doctors and to help them reclaim their agency. Which is also CRUCIAL with eczema. Patients with eczema are already feeling terrible about their skin. And so it is so important that they can feel able to openly talk with their dermatologist and not feel judged or scrutinized for their choices, where they are coming from in their educational journey, etc.
– with as few assumptions as possible”, in which she talks about not assuming women know everything about their bodies (most of us don’t), and uses the example of a period tracker app that expected you to know your cycle length before you could sign-up (I never personally know how long my cycle is). This is like if there is an app made for eczema and it keeps requiring the patient to know exactly when the flare started, what we ate that day, how long we slept, did we encounter any new allergens, etc. It is hard to track all of these little life factors, especially if we didn’t think we were going to flare, or we are new to having to deal with severe eczema.
– with side effects in mind”, in which she talks about making products that allow women to talk about/understand other side effects, an example being an app that tells you you may be more constipated during the luteal phase of your period. This would be the equivalent of an app that gets you to talk about various symptoms and co-morbidities of eczema like the oozing or the flaking or the infections, the isolation or depression, etc, so that it would be easier to identify:
one, what stage of a flare the person is in, and
two, what is most common, and therefore important to address (like increasing rates of depression).
All in all it was a fairly quick read and highlighted a lot of the innovation that is and needs to continue to happen within women’s health (and could be extrapolated to what innovation needs to happen in the eczema world too) to allow for better healthcare and treatment.
Speaking of innovation, I entirely missed hearing about this event: Make The Breast Pump Not Suck, a hackathon that happened in Boston April 27th-29th last year. It was hosted to try to address not just pump technology itself, but policies around maternity leave, breastfeeding spaces at workplaces, what barriers to breastfeeding exist, how to build community engagement, and getting stories from different women about their experiences. There were also community innovators mentioned who are doing awesome things in the field of women’s and maternity health (see here), including one in Boston called the Neighborhood Birth Clinic! The group is trying to open a free standing birth clinic in Dorchester. The event also highlighted different independent innovators like Melissa Hanna who created Mahmee, a secure platform that lets providers coordinate healthcare of both the prenatal and postpartum stages.
My dream is that there will be hackathons and the like for innovations with eczema too, besides just the Eczema Expo. And hey, if not, maybe that’s what I’ll work to pioneer one day.
I promptly abandoned my blog for a few weeks because things got crazy. We found an apartment in the city (the city proper! I’ve never lived in a city city before), got all the background checks done, hosted my parents and Jake’s parents and my sister for Christmas, packed up the house and moved out (more or less), moved into our new place, and have been rearranging and unpacking and cleaning it since. It’s a bit of a downsize from our house (but that’s not saying much as our house was huge for us) so we’ve had to get rid of lots of stuff. It’s shocking how much extra junk you accumulate just because you have the space. We are taking measures to not repeat that behavior in the apartment, and its smaller size should help.
How have you all been? How is your skin fairing?
For me personally I had a few waves of flares but now I am officially in another flake out phase. I got some idiopathic hives the other day, which according to this study, are signs of healing, along with excessive sweating. I am finding myself to be sweatier at night and sometimes randomly during the day so hopefully that bodes well. Also my skin is getting more soft and skin-like again. Even Jake has noticed. This feels quite exciting!!
I’ve been thinking a lot of about healthcare and treatments for eczema, and medicine as a field in general when I came across this article from 2014 done by the National Eczema Association that embodied some of my thoughts about the care around topical steroid withdrawal (or topical steroid addiction, TSA). The discussion section of the paper brought up a lot of interesting points, including:
Some patients believe their eczema will heal only if they never use TCS. In fact, this healing may happen because atopic dermatitis has a tendency of self-healing, and possibly TCS use may disturb this self-healing process… Did the number of patients with adulthood atopic dermatitis increase after dermatologists began to prescribe TCS several decades ago?
This is so important to think about because it does make you wonder if topical steroids are necessary to treat eczema early on (when it’s acute and not severe). Or have we as a species been warped into this idea of needing flawless-looking skin, causing us to apply whatever to our skin to make it look good, regardless of the consequences? If you think about it, we are the same species that has invented spray-on tans, skin whitening creams, chemical blemish removers, etc to use even when our skin is functionally perfect but does not meet the notions set in our head of what we believe we are dermally supposed to look like.
And the question of whether or not the number of people with AD has increased since the advent of TCS prescriptions is dead on with what I have been obsessed with trying to figure out. Now, I admit that I straddle a weird line in my head between being totally into medicine and its innovations for human health, and being a completely off-the-charts ‘let’s return to nature, cuz nature knows best’, roll -around-in-the-mud-to-build-up-your-immunity type person. Yes, it’s a confusing place in my mind, but in reality it just makes me question anytime anyone on either end of the medicinal spectrum (allopathic to holistic) tells me “this is the right thing to do”.
As such, I still wonder if our species’ conquest to protect ourselves from the baddest of bad germs, and our inventions of things like pasteurization and homogenization, have unintentionally messed us up because we are now too sterile and our bodies don’t spend the necessary time attacking pathogens, and instead have all this time to turn on us, and find fault in things they shouldn’t find fault with, with each successive generation feeling it worse and worse.
But how do I reconcile these kinds of thoughts in my own head? Do I only drink raw cow’s milk, and refuse to drink anything commercially produced FDA-approved milks? No. Does it mean I try to create a balance of bacteria by including less commercial and sterile food and drinks in my diet (e.g. kombucha, kefir, sauerkraut, yogurt)? Yes.
With the skin stuff, a similar attitude prevails. Lots of sources say you shouldn’t take hot or long showers/baths, and that you shouldn’t even bathe daily especially if you are trying to let your skin heal (since bathing is innately drying to the skin). This goes against the common cultural attitude that we as humans should be bathing everyday and it’s gross if you don’t. Does this mean I question when people tell me I need to shower daily, even after I’ve done nothing but sit on a couch for a day and haven’t sweat at all? Yes. Does it mean I refuse to shower for days at a time, even when I know I smell bad or have exerted myself and sweated? No.
I personally do shower daily these days, mostly to help rid myself of dry skin that’s flaking off. However, I rarely use soaps (too harsh on my skin), and instead I bathe in various things a few times a week (apple cider vinegar, really diluted bleach, epsom salt, etc). Actually, I’ll tell you a secret. Neither me nor my husband uses shampoo or conditioner anymore. I’m mixed race, so my hair is dry anyway and shampoo has always been a cultural no-no, but my husband is white and at first his hair was greasy when he discontinued shampoo. But now, it’s not. Over time his hair adjusted as his scalp stopped producing so much oil since he wasn’t constantly washing it away. Neat huh?
Also, though I won’t flesh out the details unless it happens, I also have something new in mind for the Feral Scribbler. Call it a New Year’s resolution… though it’s not tied to this year and isn’t a new idea, and I don’t really do new year resolutions… but besides all that, it is definitely something exciting. So cross your fingers for the surprise to be realized and stay tuned. My only hint is it would potentially address an idea from within today’s post.
And with that mystery instated, I bid you adieu and wish you well into our new year.
Moisturizer withdrawal (MW) is a hotly controversial topic in the field of eczema (especially in regards to topical steroid withdrawal). The medical community generally is anti-MW, while there are some specific doctors and communities that are very much for it.
Some of the pros I’ve read about on giving up moisturizer include:
moisturizers seal in heat, which makes going through eczema/topical steroid withdrawal more uncomfortable
your skin produces cortisol naturally, but adding moisturizer can suppress this production (more on that in a bit)
you are losing so much skin (more in reference to TSW) that you don’t want to try to lubricate the dead skin and slow your body’s attempt to rid itself of the old tissue
most moisturizers have something in them (usually to help them be more shelf stable) that does not help the natural skin biome. As such, they may hinder healing because more resilient skin bacteria, ones that can survive the pH and chemical changes created by said moisturizers, are usually not the benign ones
I then proceeded to go down a rabbit hole in studies trying to understand more about the skin and its own ability to create cortisol (again this was more in reference to trying to understand how to overcome TSW more easily/quickly). The rabbit hole led me to read about keratinocytes and how our skin reacts to stressors.
Keratinocytes (a type of outer skin cell) can create cortisol in response to adrenocorticotropic hormone (ACTH), as studied in cultured keratinocytes (meaning keratinocytes on petri dishes or other lab-made mediums) and in human skin samples. Keratinocytes also make glucocorticoids (GCs) which are known to block wound healing, but also block pro-inflammatory cytokines (something we know run rampant in those going through topical steroid withdrawal). So, it’s my thinking that the GCs could help as a balancing factor with the excessive inflammation that comes with eczema and TSW. The amount of cortisol produced also changes in response to things like trauma and UV light and dryness. It was the dryness that intrigued me because with conditions like topical steroid withdrawal, we are taught to combat it by applying more moisturizers to prevent dryness, but what if that is decreased the skin’s ability to hit a homeostatic level and kick up its cortisol production?
In Japan, there is a doctor (Dr. Kenji Sato) known for his treatment of eczema and topical steroid withdrawal, and he works in a hospital (Hannan Chuo Hospital) on a program where people enter specifically for TSW and then they stay for an average of 40 days or so and then leave, supposedly healed. Note, they are healed from TSW, but they can still have eczema flares, though those usually aren’t as bad. I’ve been curious about his treatments for a while, especially because the regime doesn’t require strict diets, and the main things it requires are keeping your nails really short, exercising everyday, and not using any moisturizers (no soap, no lotions or creams or ointments, and any showers must be shorter than 1 minute). For those interested in the hospital, there were two comics I came across a while back that tell stories of what it was like to be a patient at this hospital. The first is done on the artist’s personal experience, and the second was created after an interview with a fellow patient.
Personally, I am starting to think moisturizer withdrawal may be the way to go (for myself). I’ve noticed that I itch horribly after baths and sometimes showers, and itch even worse when I put on my lotion or creams on wet skin (which is usually the recommendation of the medical community to help seal in the moisture). To be fair, I do tend to take baths/showers that are too hot by those same medical recommendations, but water tends to cause me pain at any level of exposure so I think I enjoy hot water because it’s a different pain sensation so it blocks out the burning of open wounds.
After thinking about it, as it is currently winter in Massachusetts, this would be a terrible time to go through moisturizer withdrawal. My skin tends to fissure something horribly when it’s dry and especially in winter/when indoors with the heat on. I will think about going through MW in the spring/summer and post about a 40 day trial then.