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elleng

(133,261 posts)
Fri Feb 1, 2013, 06:50 PM Feb 2013

The Boy With a Thorn in His Joints

Last edited Sun Feb 3, 2013, 02:26 PM - Edit history (1)

'When my son, Shepherd, was 3 years old, he and his twin brother, Beau, took soccer lessons for the first time. They were so excited that they slept in their uniforms — a purple T-shirt with a yellow star kicking the ball with one of its points — the night before their first practice. But when we got to the field the next day, Shepherd’s enthusiasm evaporated. While Beau and the other kids ran zigzags around the cones, Shepherd stood still and looked bewildered. When it was his turn to kick the ball, he seemed lost. After 15 minutes, he walked off the field and sat down in my lap, saying he was too tired to play. We watched the other kids, and I pointed out to him the drills I thought he might enjoy, the ones that Beau was charging through. But he refused to go back to the field. His passivity didn’t concern me much — he was 3, after all, and I already thought of him, in the way that parents tend to categorize their children even as we tell ourselves we shouldn’t, as a little clingy and not especially athletic. My husband, Darin, and I had recently noticed that Shepherd occasionally walked with a limp, but it was faint enough that sometimes when you looked for it, it was gone. Faint enough — though it seems incredible now — that we didn’t connect it to his reluctance on the field. . .

We went to see Philip Kahn, a pediatric rheumatologist at NYU Langone Medical Center, who gave Shepherd a diagnosis of juvenile idiopathic arthritis (J.I.A.), an autoimmune disease that causes painful swelling in the joints. J.I.A. can lead to stunted growth, disability and, rarely, blindness. . .

Before we hung up, she mentioned that her sister-in-law had a friend who sent her own son’s arthritis into remission with alternative medicine. Her name was Char Walker, short for Charlotte. Did I want to talk to her? I told her that I didn’t, that we liked Dr. Kahn and wanted to follow his advice for now. We were starting Shepherd on a course of naproxen, a relative of the nonsteroidal anti-inflammatory ibuprofen. We didn’t want to mess around with something that might not work, when conventional treatments were known to be effective. What I thought that day but didn’t say to Rae was, We don’t want to waste time talking to a kook. . .

I heard back from Elena Ladas, the complementary-medicine researcher Dr. Imundo passed me off to. Her message was simple and direct. Yes, she said of Walker’s regimen, if it seems to be helping, keep going. We weren’t fools after all, I thought. That short phone call was the thing that got us all to the finish line. . .

At six weeks — to the day — Shepherd woke up and, for the first time in months, got out of bed himself. I’d gone into his room to help, as I did every morning, and found him standing in his pajamas. “Mommy,” he said, “my knees don’t hurt anymore.” He was probably wearing the pajamas with the skateboarding monkeys. Beau was probably groggy, still in bed. Honestly, I really don’t know. When I think of it, there’s only Shepherd, standing there, not crying. I was too stunned to say anything back before he scampered out to the kitchen for breakfast. Within several months his arthritis pain was gone.'

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&hp

Edited for copyright reasons.





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2on2u

(1,843 posts)
2. Read the entire article, thank you for this.... especially liked the following:
Fri Feb 1, 2013, 07:21 PM
Feb 2013
http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=6&_r=0&hp

>>I grabbed my pen and paper and started taking notes. No gluten. No dairy. No refined sugar. No nightshades, a group of plants that includes potatoes and tomatoes, which are thought by some to be potentially inflammatory, as is sugar. Every day, Shane took a probiotic. Plus two tablespoons of sour Montmorency cherry juice and at least 2,000 milligrams of omega-3’s from fish oil, known for their anti-inflammatory properties. Instead of naproxen, Shane took a combination of ibuprofen and Tylenol to lower his overall intake of nonsteroidal anti-inflammatories, which can be hard on the gut. And a quarter teaspoon, daily, of the four-marvels powder.

Walker said she believed that her son’s arthritis was caused by something I had never heard of before — leaky-gut syndrome, a concept that has been accepted in alternative circles for years despite a name that asks you not to take it seriously. The idea is that inflammation in the gut causes the tight junctions between the cells that make up the intestinal lining to loosen. Then, like a lax bouncer, the barrier starts letting through undesirables, various proteins or bacteria that would normally be rebuffed; they then leak into surrounding tissues. The uninvited guests, the hypothesis goes, then trigger an offensive by the body, which uses inflammation to try to get rid of them. That sustained inflammatory response characterizes autoimmune disease.<<
 

2on2u

(1,843 posts)
4. Yeah, it's hard trying to get the most important stuff in 4 pgrfs.... I am sending this
Fri Feb 1, 2013, 07:27 PM
Feb 2013

article to all near and dear to me cuz inflammation (perceptible or not) is behind so many other isssues.

Warpy

(112,175 posts)
6. The problem with RA and a lot of other immune system diseases
Fri Feb 1, 2013, 08:11 PM
Feb 2013

is that they wax and wane in severity, making sufferers (and their parents) open to quackery. It also takes several weeks for NSAIDs to reach a steady blood level and noticeable reduction of joint inflammation.

While there is nothing dangerous in the regimen, I did notice that the NSAID was continued. I do find daily Tylenol a little worrisome in a 3 year old, it's hard on kidneys and liver.

I don't think anyone can say for sure what helped this kid's arthritis, the plural of anecdote is not data. However, any regimen that continues the daily NSAID is not going to leave him open to massive damage. His mom will want to watch his kidney functions and liver enzymes, though, because of that Tylenol.

Celebration

(15,812 posts)
7. sensible comment on the article
Sat Feb 2, 2013, 12:24 PM
Feb 2013
The high priests of the medical/industrial complex church continue to collect millions for treatments that don't work and continue to ignore the evidence of the treatments that do work and would not be profitable.
The blind worshippers of this church are the ones that will suffer.

How many "anecdotes" does it take: "I ate it, I had pain. I stopped eating it, the pain went away. I ate it, I had pain again. I stopped eating it, the pain went away again. Whenever I eat it, I have pain. And whenever I stop eating it, the pain goes away." How many people have to have that experience in order for it to constitute as evidence of a cause and effect relationship? How many people have to have the experience of taking a drug and still having pain, in order for there to be evidence that there is NO cause and effect relationship?

The blind worshippers will always believe the teachings of the high priests, regardless of what an actual human experiences. And they will be the ones that will suffer.

Open minded logical thinking people will base their decisions on the reality based evidence of what is working in actual people, in the reality of living life day to day, and they will be the ones that will find healing
.

Warpy

(112,175 posts)
8. When they pile up, they are tested.
Sat Feb 2, 2013, 05:07 PM
Feb 2013

When those tests pan out, eating whatever it was is called "medicine."

Mostly they just show the placebo effect.

Celebration

(15,812 posts)
9. if they can make money they are tested right away
Sun Feb 3, 2013, 06:43 PM
Feb 2013

and the outcome measures configured in such a way as to almost guarantee success.

If they don't make money, there is no incentive to test them. So maybe yes, maybe no, and later rather than sooner.

Warpy

(112,175 posts)
10. Wrong. NIH grants aren't awarded to people trying to make a bundle.
Sun Feb 3, 2013, 06:47 PM
Feb 2013

There is a lot of pure science going on at universities and a lot of that pure science is dedicated to seeing if there is anything to quack cures other than the placebo effect.

Celebration

(15,812 posts)
11. big enough issue
Sun Feb 3, 2013, 08:43 PM
Feb 2013

that they established the fund for complementary medicine, which percentage wise is not that great. Not much money for diet research. Hard to design studies anyway, for diet. I'm not saying there is no research going on. Just very little that is "accepted", because they usually aren't replicated, big enough, etc. etc.

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