Ramblings…about Lead Poisoning, Plaque Psoriasis, the Sun, the Sea, and Poverty…

Charlie Rubin & Avi Rubin, Feb 2018 Plaque Psoriasis

Charlie Rubin & Avi Rubin, Feb 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 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!

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 Portland 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!

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

As always, if you want to support my advocacy work (help me continue to be in a position to protect other children, so they do not suffer the same fate as my children) during what is otherwise a very difficult time please consider helping in one of the following ways:

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This is my baby's foot this week. Severe plaque psoriasis is just one of the impacts of his lead poisoning as a baby.
This is my baby's foot this week. Severe plaque psoriasis is just one of the impacts of his lead poisoning as a baby.

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