Charlie Rubin & Avi Rubin, Feb 2018
Originally published April 15, 2018
Avi is now 13 years old. He’ll be 13-1/2 in July. He was just seven months old when he was acutely lead poisoned. The photos below are of Avi’s right foot this week.
My readers are aware that I deal with the impacts of childhood lead poisoning every day. I often talk about the behavioral issues and learning challenges of my children. Somehow though, photos of dramatic physical impacts really hit home [even though in many ways these impacts can be less challenging than the “abstract” (not as easily conveyed in a photograph) cognitive and behavioral issues!] Accordingly, I try to share updates on Avi’s Plaque Psoriasis periodically so you can see just one more thing many lead poisoned kids (and their families) have to deal with every.single.day.
Avi got new shoes this winter…
Because they were different than his “regular” (habitual/exclusive daily-wear) shoes, his body saw them as “an intrusion/assault” and the Plaque Psoriasis on his feet started forming on the parts of his feet that were being newly touched by the new shoes.
Let me explain: it’s always like this — new spots come up, based on some new factor, in response to a cut or a scrape or a mosquito bite, or new article of clothing or other thing that his body considers an intrusion [like the areas on his skin from which his own hair and fingernails emerge!]
**** To date, no one (to my knowledge) has yet undertaken a formal study specifically linking severe Plaque Psoriasis to early childhood lead poisoning. [Studies have been done clearly showing that childhood lead poisoning causes a compromised immune system; studies have been done clearly showing that plaque psoriasis is often an issue with people who have compromised immune systems — we’re just waiting for a study to connect the two dots on this issue.] ****
Our assertion that Avi’s Plaque Psoriasis is likely a result of him being lead poisoned as a baby is not an isolated case based solely on our own personal experience. I run a “Secret” support group on Facebook with more than 600 parents of lead poisoned children. Many of these children also have skin issues that appeared after they were poisoned — including several who also suffer from Plaque Psoriasis!
The most important factor here is that severe Plaque Psoriasis is very rare in children. Period.
Children almost never get this [Avi has had it since he was a toddler]. Moreover, virtually all of the Psoriasis medical treatments are explicitly “only approved to be used by adults“ [due to the fact that most are potentially quite toxic and carry the risk of well-documented dangerous side effects].
The only thing that has helped…
The only thing that has consistently helped him so far is being in a warm climate with access to the ocean. Daily exposure to sunlight and salt water have a “miraculous” effect for him — but unfortunately, we live in Portland, Oregon – so each winter his Psoriasis flares up intensely [in new and unexpected ways & areas each time!] and we do our best to get him somewhere he can swim in the ocean for a couple of hours a day for a couple of weeks to get it better enough to get him through to the summer [in the summer he swims every day in the community pool a few blocks from our home; the chlorine in the pool (combined with the sunshine) also helps a lot].
And YES, we have already tried pretty much every single cream, lotion, elixir, potion, herbal salve, folk remedy, alternative health industry and cosmetics industry trade-show carnival-barker preparations, etc. as well as over the counter and prescription medication available(!) None of them have worked. None are reasonable/sustainable/long-term treatments. Spreading lotion ALL OVER his entire body every single day is not a practical solution, plus – with his sensory issues, he won’t stand for it.
While the pictures featured here are just of his foot, the Plaque Psoriasis is all over his body. No body part has been spared. This year (2018), the areas that are most effected are his legs, arms, shoulders, head, face, feet, penis and anus. Yup, you heard that right: this is also on his genitals; this is the uncontested biggest impact of having severe Plaque Psoriasis as a young kid! His foreskin can’t retract fully, if we don’t stay on top of treatments and lotions his penis bleeds [can you imagine being a 13 year old boy with this problem?!] It is very very painful – as well as embarrassing, exhausting and demoralizing.
Over the years, we have been to the top pediatric dermatologists in the State (with OHSU), and have been given prescription topical medications to help him — but these medications each had one thing in common: they specifically stated that they were “not to be used on the face or genitals” – the two areas where he needs them the most!
Avi got accepted into an experimental medical study!
About a year ago we were thrilled that Avi got accepted into a medical study to try out a promising new systemic (injected) Plaque Psoriasis medication on children — one that had initially only been made available for use by adults. We were accepted into the study and participated in it over about 6 months. It was explained to us that each of the treatments in this program would normally cost $10,000-$25,000 per injection! In the months that we participated in the study we did all of the preliminary blood work, the physical exams, the interviews (it was terribly psychologically confronting/traumatic for poor little Avi!)…and got just one of these $10,000+ shots before we were kicked out of the study (more about that in a moment)!
Within the 4 to 8 week period following this first (and only) treatment, his Plaque Psoriasis cleared up — to an unprecedented/incredible degree! We were incredibly – if cautiously – excited and eager to continue the program, which (we were initially told) he might be eligible to participate in for 24 to 48 months!
Avi got dropped from the study!
Then, unexpectedly, they dropped us from the study! Avi had just barely warmed up to the idea of getting shots and blood tests on a regular basis (every two months or so), but as a devout science nerd, he was excited to be participating in a research study that would help other children. He was so disappointed, and so was I!
We were dropped from the study on a technicality: Avi is not vaccinated. Given he was lead-poisoned at such a young age (with extreme physical impacts at the time), he is a medically fragile kiddo, and his pediatricians informed us that in his case, vaccination was not advised. The Plaque Psoriasis study only mandated that he be “vaccinated to Oregon standards” [which, technically, he was — since Oregon has vaccine choice, and does not require or mandate vaccination]. However, the medical group overseeing the study was apparently not aware of Oregon’s standards, and wanted him “to have at least some basic vaccinations” as a condition to continue with the study; but there was also a “Catch-22”, in that they simultaneously stipulated that there could be “no other medical factors introduced mid-study for subjects” — and vaccinating him to continue with the study would be a “medical change”! We also could not get the administrators of the study to tell us which vaccines they would want him to have to continue with the study — if that was even a possibility. [In retrospect, we suspect that if they stipulated that he have specific vaccinations in order to continue in the study they would, in fact, have been in violation of Oregon State law (and they or their legal counsel would have discovered this upon looking up the statutes) – and that might be why they chose to instead, just drop us from the study!]
And so, here we are.
Yet another impact of poverty (either precipitated by mundane circumstances, or, in the case of many families of lead poisoned children, as a direct consequence of a medical tragedy [or in my bizarre, surreal case, induced by legal persecution that has limited my ability to make a living while I focus on defending my advocacy]), is the inability to just “take off to a sunny beach for a week or two” mid-Winter or early Spring (i.e. now) to give his skin some time to heal [although frankly I am trying to arrange to do something this month if at all possible to help my kiddo — as this year his psoriasis is worse than it ever has been]!
Thanks for reading. Please let me know if I can answer any questions.
Tamara Rubin
#LeadSafeMama
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Have you tried Epsom Salt Baths? I would try 3 or 4 cups in a nice hot bath and soak for at least a half hour. Pour the water over your head and also let a soaked wash cloth sit on problem areas on the face and head. Thought this might be worth a try?
Hi,
I am new to your blog and this post really hit home for me. I was diagnosed with psoriasis at the age of seven, I am 33 years old now and still deal with it on a regular basis. I heard about you while listening to the Gutsy Health Nutrition podcast. Keeping an eye on what I eat is the only thing that has helped me with my psoriasis, though I have noticed that the sun and salt water do help immensely. I know the struggle of everyone telling you what works and doesn’t work and it can be so unbelievably frustrating, as a kid no one else that I knew had it and it was very hard to even look at myself in the mirror most days. I did the topical treatments, the injections, and the toxic drugs. None of which worked long term. Now that I am an adult, the staring and judgement doesn’t bother me as much. But the Psoriasis can get to a point where it’s excruciatingly painful, and that bothers me a lot. I take a high dose of vitamin D during the winter to counteract the lack of sun. About 10,000 IU a day for 3 months, and then 5000 the rest of the time. I also eat a really clean diet and supplement with fish oil, bromine for digestion, enzymes, no sugar, no dairy, no wheat, no soy. Every Body is different and It’s hard at first, but it has helped my skin immensely. I truly hope that your son finds some relief, I can empathize with his pain on the Psoriasis level, and I know as a mom it’s so hard to see your kids suffer. My mom tried everything too. I don’t want to tell you what to do or give you advice that is unwanted… But if you have any questions feel free to ask. Thank you for your blog. I am going to try and connect my childhood toys and possible exposure to lead with my Psoriasis and see if I can find a connection. You’re doing hard work and it’s noticed. Thank you.
I’m curious if you’ve looked into microbiome sequencing. Note: I’m not saying this is a cure, just wondering if it might help. It looks like there is even some early data on lead and microbiome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5654721/
Another note: I am not an expert! I am just another mother trying to figure out how to take care of her kid. We are currently down this rabbit hole, and testing + appropriate probiotics has done wonders for my infant’s eczema– TinyHealth (shotgun sequencing for the microbiome) has been game changing for us. Please feel free to ignore if not useful — I’m only mentioning it because I wish someone had mentioned it to me.