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!"
, 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 -
Premature babies (1 in 10 births) are born with a known trace mineral nutritional deficiency because mom passes on trace minerals during the third trimester. Most children (85%) will self correct these deficiencies within one or two years when they start eating "real food" which has the missing micronutrients in it (and breast milk is good, but doesn't have the "extra" these children need to correct their early deficiency status). Children can also end up in a deficiency state through maternal deficiency (if mom doesn't get it/absorb nutrients herself - Crohns, celiac, etc. - she can't pass it on what she doesn't have), absorption issues (overuse of antibiotics, celiac, Crohns, etc.), malnutrition or exposure to teratogens.
Micronutrient (trace mineral) deficiency causes Growth Retardation which means
- poor growth and appetite
- impaired immune responses
- weak muscles
- developmental delays
- “general ill-thrift”
Growth Retardation presents in different ways during the life cycle:
- At birth, as low birth weight or premature babies
- In infancy, as failure-to-thrive and developmental delays
- In childhood, the weak muscles (especially core) are (mis)diagnosed as cerebral palsy
Deficiencies also present as other neuromuscular issues, including sensory processing issues
4 out of 5 children with these symptoms see improvement within six to eight weeks when given oral dosing of liquid trace minerals at a bolus level of one-and-a-half-times an adult dosing (which is well within safety guidelines of RDA, AI, etc.).
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.
= new reply since forum marked as read
I am a twin. I was born about six weeks early.
Identical or fraternal? Are you close? My children get along, but I worry about the future.
and I'm here to give you the biggest I can muster
You are definitely one of those who will leave this planet better than it was when you found it.
And right back at you!
And a simple intervention/prevention that benefits 9 out of 10 born preemie and 8 out of 10 non-preemie.
It doesn't fix chromosomal abnormalities or repair traumatic birth injury, and the older children respond slower, but it will prevent those 83% of pesky "misdiagnosis!"
(((((Ida)))))
You are SO AWESOME! Am I allowed to feel proud of you? I do! I feel so proud that you carried on with this while DU was howling at you, that was VERY revealing.
BRAVO!!!!
I've long been amazed at the way pregnancy is treated by medicine and I think I said at the time to you that I have sisters and they and my mother gave me radically different and sometimes horrifying stories about their pregnacy experiences which was enough to me to see that there's a long way to go before women are taken even vaguely seriously in this area of human existence.
It's utterly, utterly BAFFLING to me, the attitude. Who's your main source of information about child development? THE MOTHER. Who's the person who gets TOLD the most about child development? THE MOTHER. BACKWARDS! ALL BACKWARDS!
Anyway I think I said all that when we talked about it at the time.
You are totally fricken heroic, Ida, I'm so pleased you stuck to your guns.
Never been good at sitting down and shutting up, and thank heavens for that! Your kind words have always been much appreciated!
If they are having any neuromuscular issues, etc. feel free to contact me. We will be starting a "grandparent outreach" soon - parents get so exhausted, they don't always find this as quickly as they need. And enjoy them!
And the reality is, even our detractors bring good things into our lives. The worst person I have ever "met" on DU still taught me a lot, including what I was going to have to deal with if I intended to assault the ivory tower. I can be grateful for that. So can hundreds of parents of children who are living better lives.
When I'm criticized, I tend to curl up in a little ball and cry.
You, with your persistence, resilience and defiance, achieved something enormous that will make a huge difference in many people's lives.
I feel honored to know you through DU. Wishing you many blessings.
Mean people SUCK! Lol! But the price of silence was children dying, so....
Laboratory analysis of the actual contents is in the first few paragraphs; all amounts (even at bolus dosing) well within safe levels, etc.
Most similar products come from the same area, and have the same contents, which is why we get reports that multiple brands work. You can view a list on the website, or just google "liquid trace minerals". (We don't sell them; we have data on PDCM but there are too many reports of other brands working for it to be a coincidence.)
in your research, sticking to your principle, in spite of the many haters on here. Bravo on helping families that our vaunted medical system would throw away.
Their challenges made it embarrassing to whine about a few "mean people on the Internet" - lol!
DU should be so proud of you.
You are an amazing person and teacher!
You are a true hero, you have made so many lives better. THANK YOU!!!!!!!!!!!!!!
Made it difficult for "trained professionals" to look at the evidence without cringing from fear of being attacked as fools by not only their peers, but "quack watch" but thanks to "inborn errors of metabolism" being a recent discovery of "correctable misdiagnosis" explaining the children who get better as "misdiagnosed" is palatable science.
I suspect a few lawsuits might have to occur before pediatricians suggest a $20 course of nutritional supplementation instead of tens of thousands of dollars of ineffective therapies, but I am a bit cynical....
I find your missive to be an interesting one. I'm tempted to look back in the archives, but that's getting away from the point and would be solely based on how ridiculous people can be in their slanderous snark when not talking to you face to face. I've seen it here a lot.
Yes, this state of overcoming that type of criticism goes a long way to the ultimate skin you need. You've taken what you've learned and have become wiser in the ongoing curiosity to ask, "Why?" THAT is the best use of your intellect. People here, in the long run, do help shape that. So, that's a lesson.
Have you share this is any neurologists? I would love to share your OP with one that I work with (I'm a respiratory therapist), because of her progressive practice and admirable approach to care.
Back at you!
MMM
people trying to "protect" those they considered vulnerable from ...
Sigh. Okay, even my most charitable can't find a nice way of saying "they think other people are stupid and have to be saved from themselves" but I am sure they meant well?
Lol!
I am a raving liberal, and have been insulting on occasion
to those of different views....
My kids were both premies and are small for there age. Strong though. Probably not for 9 and 11 year olds. Still interesting.
Eta: son was 10 lbs at six months. Failure to thrive doctors said. I've basically just followed him around with food for the past 11 years!
a chapter of NORML in Michigan. I remain proud of his efforts (and support them) to this day. Since I have had this much difficulty getting something legal and inexpensive investigated, it simply boggles the brain about the challenges getting researchers to check out the benefits of cannabis has entailed. 
while you won, I think the kids you championed for are the real winners.
The world is better and brighter having you in it.
Thank you for doing all your research and not giving in.
they have been doing this for decades!
The runt pig components still makes my blood boil - you give it to runtpigs, but not "runt babies"?
Argh!
But thank you! Lol!
with sensory issues. I was recently speaking with a physician who specializes in these issues, and she is still stunned by the general ignorance in the medical community of these issues.
Awesome and amazing. Thank you and keep up the fight.
I remember the NICU. One of the things that kept me going was the PTSD from the whole experience - and our stay was only a few weeks long!
working at biting my tongue on occasion, but not as often anymore.
Twenty years times 16,000 children per year is too damn long to wait for their "pride" to get over the fact a non-medically trained woman figured it out.
Thank you!
I did not follow you in earlier years. But your story is an important testimony to your belief and success.
Of course, not everything is documented the way you have done it. Certainly the mis-association between vaccination and autism is an example.
But there is a difference, at least in my mind, between preventing a treatment (vaccination) and adding a treatment (trace minerals). In your case one should have asked: what harm can adding the treatment have?
And this is what it comes down to it the "do no harm." I am also a great believer in the "placebo effect."
If one is using a treatment and there is no harm and, apparently, an improvement, than why not?
Congratulations.
For people to share on facebook or wherever.
Is this you?
http://www.preemiegrowthproject.org
My name, June 9, 2012 in GD but we learned more over the next several years, which is at the website you found, plus we do a lot on Facebook.
Thank you for your support!
from me, mine, and ALL of us!
justifications for the initial investigation; their 90% success rate in combating famine situations now has researchers paying attention to the fact that children who received the intervention (basically vitamins and the same trace minerals we are using) are seeing better long term health than children who never went through a famine situation and ate "normally". There are also some fascinating studies about the impact of nutrient deficiencies in treating mental health issues (but obviously outside the scope of my project). When you start looking, it really makes you wonder how people were missing it for so long.
Thank you!
A lot of this was put in place to protect people (think of the horror faced by Tuskogee Airmen, for example) and change in thinking comes slowly. This is a paradigm change. There is going to be pushback. That doesn't mean I have to like it, tho.
This is absolutely wonderful!
The story of Lorenzo's oil came to mind when reading this. Thank goodness you persevered.
Fuck the detractors. You win!
Lol! Thank you!
Breaks my heart. I almost quit at one point because (with an IT background) I was considering the whole thing a fail because "only" 83% while the doctors were being skeptical because "too high!" Lol! Perspective is everything.
Thank you!
What we found was an undiagnosed condition (growth retardation caused by preventable and correctable nutritional deficiency) that in 111 out of 134 cases was MIS-diagnosed as cerebral palsy because they saw improvement in their mobility levels and such. The younger they were, the faster they responded, and we have no data on children past twelve years of age/suspect those changes (if any) may be impacted by the long term deficiency issues and growth plate changes, etc.
No one can CURE cerebral palsy - the very idea is heresy! 
And besides, if we had Real Proof (like video and data and physician observant - oh, wait! we do!) then Real Researchers would be all over it --
Ask me about the last cerebral palsy conference I attended. In the business world, we call the stuff they were doing "job security" because they KNOW they aren't required to actually make any new insights, let alone look at videos of "impossible" things (like little girls who get out of their wheelchairs on their own at age nine).
This intervention may be able to change that number to 98%. So glad your children are healthy!
and kudos to you for persevering.
K&R and bookmarked. Well done!!
I have an illness that prevents me from being able to absorb nutrients, similar to Celiac so I will study this.
Beautiful work and I for one Thank You. The families of these children must be over the moon.
Keeps me going - I love the "your child will never walk/needs a feeding tube/won't talk" stories that end "AND THEN....!" With good news.
I am proud to know you.
Your detractors need to STFU.
And they helped me get stronger, plus I think they truly care.
It is a discussion board. I owe them my thanks.
(Grits teeth): Thanks.
But to you,
And desperate for help getting it in front of the "right people" is an accurate description, but that part of the effort is done now.
Now it is just about getting the word to the people who need it while creating a groundswell of pressure demanding investigation.
Whatever it takes to save lives....
You are quite the keyboard commando!
Please PM where you are getting "bank foreclosed property" - as you may have read a few years ago, we won a HUGE fight with our bank, and their (illegal) foreclosure was reversed/they were fined substantially, so now you are making me wonder if this is something that is going to keep popping up for decades...?
The "squatting in a foreclosed house" line is insulting; I hope you modify and/or delete the slur. Again, I get that you are playing keyboard commando, and I suppose this type of Trolling is something I should just expect from people who want me to sit down and shut up.
Let's see - paperwork issues, opinions on taxes, reference to financial issues (foreclosure!), squatter, and I see down thread you don't like the company that makes one of the products that helps children.
Eh. Whatever.
Your county charges to pull even basic property tax records so didn't look there, I need my $2 to buy a McDouble for lunch
It will probably be a long time before that goes away. Oh well - it's still ours.
