December 5, 2015

Me vs CP and DU (the long story, for those who don't know it)

If you had told me how important a political message board was going to be to my life back in 2004, I am not sure I would have believed you. Ten plus years later, I have many real life relationships with the people I have met through here, but truthfully, an inadvertent flame war back in 2012 is probably one of the most important interactions I have ever had.

A bunch of people were being JERKS and calling me a liar and I was STUNNED.

I don't tell lies, and my feelings were hurt. I had been a member in good standing for eight years when this went down...

But I am getting ahead of myself. Let's start at the almost beginning.

I started trying to get pregnant in 1999. It finally happened in 2001 (twice), but I miscarried both early. Infertility issues continued to be front and center for me (a third pregnancy and miscarriage in early 2004 was something I was dealing with right about the time I joined DU), and my community here was AWESOME when I got pregnant with twins in 2006, dealt with non-stop vomiting, five months of bed rest and then beautiful, gorgeous amazing (premature) boy/girl twins. I shared pictures here, and my DU friends were appropriately awesome in their admiration for my adorable babies.

My twins were eight months old when I first started really getting a clue that they were "unusual preemies" - they had gone from 4 lb preemies to 14 lb four month olds at an unprecedented speed, and then continued on top of the charts, meeting milestones early, etc. - and I was convinced I knew what had caused this. I shared the information on DU, and that post still comes up on google searches.

My twins were two years old when I "got stubborn" and began reaching out to get my intervention investigated. My medical background was "informed patient" and I was deferential at first. I contacted "everybody and their brother" which meant over fifty different medical professionals, organizations, companies, public health officials - you name it, from the drug companies to the formula makers to the insurance companies to the NIH to the university researchers to the - you get the idea. I told everyone. This simple intervention - liquid trace minerals in addition to normal vitamins - seemed IMPORTANT.

I was patted on the head, told we had "gotten lucky", advised to enjoy my beautiful healthy children while counting my blessings because of it, and ignored. I whined about it on DU, and someone posted a link to a textbook that 100% validated my intuition - and I got PISSED!

If it was documented in the damn textbook, why weren't they telling parents about how easy the fix was?

Well, fast forward a bit. I started a non-profit called "Preemie Growth Project" and with an ignorance of possibilities that is truly breathtaking in hindsight, jumped in while doing everything wrong. I didn't understand the difference between clinicians and researchers, so as more babies "got lucky" I expected the Magical Medical Overmind to take over.

Um, that did not happen.

In 2011, a "floppy baby" joined my project. He was 9 months old, weighed 12 pounds and was diagnosed by respected physicians as having "severe hypotonia". When his mother got insistent on knowingly what was going on, they told her he was going to be a quadriplegic who would spend the rest of his life in a wheelchair. He would be diagnosed with cerebral palsy when he was two years old, but they were just telling her then so she could wrap her head around what her life was going to be and start adjusting to it.

She met me the next day. Ten weeks later, her son weighed 22 pounds, took his first steps, and no longer had any cerebral palsy symptoms. He started kindergarten this year (normal kid, no special needs), and has been playing baseball the last two summers. He is adorable.

Back in 2011, I repeated my reach out efforts and was told categorically "floppy babies don't get better" and "he must have been misdiagnosed." I pretty much decided to walk away. I was busy. I had a life - twins! Husband! Battle with bank over house! Ongoing family drama! Full time job! Etc.

And then the Neighbor Girl incident happened in 2012.

We finally formally met the new neighbors during a warm spring in late March/early April. My twins were five, and their son was five. While the three children played and I tried to make a good impression ("please let them like us - PLAYMATES!&quot , the grown ups talked, and their 9-year old daughter watched the others play from her seat in a little red wagon. They shared her story (25 week preemie, born weighing 1 lb 10 oz, cerebral palsy diagnosis, confined to a wheel chair, multiple levels of impairment) and I shared my children's story/my work with the Preemie Growth Project. It was a shame she couldn't be in the Project (the assumption was this only worked for babies because of the high growth rates during the first year), but I ended up offering a bottle of the liquid trace minerals in lieu of a "welcome to the neighborhood bottle of wine" since they were non-drinkers. They went home, there was probably another snow storm/everybody was busy, and I didn't see them again until June 8, 2012 when I went to make "summer play date" arrangements and my world changed.

The little girl was STANDING UP. Let me repeat that: the girl confined to a wheelchair was STANDING UP.

There were other changes, too, and the family was excited. I was stunned. I didn't know anything about cerebral palsy - was this normal?

And here is where DU comes back into the picture. I made a post asking about this, and wondered if anyone else would be willing to try it, too. The post dropped like a brick, and I went about my business (which included the brain explosion of figuring everything out).

Later that night, I signed back in and discovered my post had Not Dropped, and I was being called everything except honest. The venom and hostility were stunning, and multiple meta threads were started about the type of scum I obviously had to be to "offer hope when there was none." My attempts to explain were ridiculed, my name was smeared in mud, and honestly, I was CONFUSED. This was a big deal, right?

If people hadn't been so obnoxious, I may not have asked for a video interview with her. Thank you for that. I offered to share it with people PRIVATELY (she wasn't in the project after all), and my biggest detractors refused.

Before she began correcting her previously undiagnosed trace mineral deficiencies, her hands had been frozen in hyper spastic spasm which did not allow her to take care of her own bodily needs. This excerpt from that June 10, 2012 video focuses on her hands, her increased muscular weight gain (44 to 50 pounds in six weeks!), and of course, her STANDING UP --

I began recruiting other children to try this, and continued to fight with people on DU. I learned so much from them - what was happening was IMPOSSIBLE - and more importantly, began to get an inkling of the challenges of changing a paradigm from "incurable" to "correctable, preventable nutritional deficiency" - it flabbergasted me. This was EASY. And CHEAP.



The first dozen children I recruited all saw improvement in not only their mobility issues, but also in failure to thrive, cognition, and (shockingly) sensory processing issues.

Meanwhile, here is an excerpt of the Neighbor Girl's hands in August -- (no longer failure to thrive, and able to independently navigate stairs) --



I finished my accidental feasibility study in 2013. All total, 271 children joined the effort, and solid data was collected on 134 of them. 111 of those 134 children saw improvement in a minimum of four of the eight categories tracked, and I have lost count of the hundreds of other children who have benefited as well.

But where the heck are the Real Researchers?

Ah. It turns out that is not going to happen for decades, if ever. It is somewhat political (don't use words like "cure cerebral palsy" because cerebral palsy by definition is an incurable mobility issue, so anyone diagnosed with cerebral palsy whose mobility issues improved was obviously MIS-DIAGNOSED, and the fact that I keep seeing 4 out of 5 children with this diagnosis improving is ...um, disconcerting and probably a really weird coincidence, right?) but more bureaucracy than conspiring.

"There are none so blind as those who will not see." I figured it out, and truth be told, my detractors here on DU helped - from those who sneered at my "citizen science" approach to research all the way through to the liars who accused me of peddling "snake oil" (still have super clean hands, thanks for asking, don't sell any of the dozen brands that seem to work/suggest you buy the PDCM brand on Amazon because it is the brand I have data on/free shipping but hey, whatever you like that works) to the sanctimonious self righteous folk who believed "Nutrition = Woo" - please, ALL OF YOU, accept the thanks due you for your part in SAVING LIVES.

You see, without my desire to explain it to you in clear enough language that you would GET IT, I wouldn't have been prepared for the pushback in the real world or even have been able to "figure it out" - I needed you, not just to toughen me up, but to be a foil so I could decide whether or not you were right, or if this was a battle worth fighting.

Turns out it was and is; here it is, one more time -



The reason this works is because these nutrients are necessary to not only grow the body, but also the brain, which turns out to be more "repairable" than previously thought, especially in the very young.

There is hope.

Ta Da! I win.

But only 83% of the time, so the battle isn't finished yet.

Thanks, DU.