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(10,559 posts)
Sat Dec 5, 2015, 10:10 AM Dec 2015

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

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 -

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.

158 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
Hi, Ida. bigwillq Dec 2015 #1
Yeah! How is your health? IdaBriggs Dec 2015 #2
Fraternal. bigwillq Dec 2015 #3
That is Awesome madokie Dec 2015 #4
Thank you! IdaBriggs Dec 2015 #60
Keep it up Ida TexasProgresive Dec 2015 #5
No, not a drug - a different understanding of one of the causes IdaBriggs Dec 2015 #61
I remember. sibelian Dec 2015 #6
Thank you, sibelian. IdaBriggs Dec 2015 #62
May good things come your way Ida elias49 Dec 2015 #7
Thank you! IdaBriggs Dec 2015 #63
i'm curious if you mean that you want her to make lots of money off the study she's been posting CreekDog Dec 2015 #132
ROFLMAO! "Make lots of money!" Please explain HOW. IdaBriggs Dec 2015 #142
Knr roody Dec 2015 #8
Thank you! IdaBriggs Dec 2015 #64
When the people who are supposed to help you MuseRider Dec 2015 #9
Thank you, Muserider. IdaBriggs Dec 2015 #65
I can't for the life of me figure out navarth Dec 2015 #10
Nature of the beast - some people are just mean on the Internet. IdaBriggs Dec 2015 #67
Well, in any event, thanks for your good work. navarth Dec 2015 #120
Thanks for sharing your experience. Skidmore Dec 2015 #11
Thank you! IdaBriggs Dec 2015 #68
Keep up the good work, Ida.. fascinating. mountain grammy Dec 2015 #12
Thank you! IdaBriggs Dec 2015 #69
I didn't know your story, but I am amazed at what you accomplished LiberalEsto Dec 2015 #13
Thank you, and let me confess - that happened sometimes! IdaBriggs Dec 2015 #70
What trace minerals did the kids in your study take? nt SunSeeker Dec 2015 #14
This may answer your question (and mine): Ghost Dog Dec 2015 #55
Take a look here -- IdaBriggs Dec 2015 #71
Thanks Ida. Will do. Ghost Dog Dec 2015 #97
I sent this by PM yesterday (family obligations). IdaBriggs Dec 2015 #72
I applaud you heaven05 Dec 2015 #15
Thank you - the courage of the families kept me going. IdaBriggs Dec 2015 #73
do they sign standard medical waivers for medical research? CreekDog Dec 2015 #131
Do you know what a feasibility study is? IdaBriggs Dec 2015 #141
K & R - Amazing, Ida!! Duppers Dec 2015 #16
(Blush) and THANK YOU! IdaBriggs Dec 2015 #74
Wow, amazing and thanks from the bottom of my heart. lark Dec 2015 #17
Thank YOU!!!! IdaBriggs Dec 2015 #75
Cool stuff. blackspade Dec 2015 #18
Curing a condition that by definition is incurable... IdaBriggs Dec 2015 #76
K&R! Never Give Up, Ida... MrMickeysMom Dec 2015 #19
My favorite NIH epidemiologist encouraged the "tough skin growth" - IdaBriggs Dec 2015 #77
It's people like you SCantiGOP Dec 2015 #20
Thank you! IdaBriggs Dec 2015 #78
Yes you won! BTW loved that line in your story. kydo Dec 2015 #21
Thank you! IdaBriggs Dec 2015 #79
At the very least, your treatment seems to cure "misdiagnosis"! Bernardo de La Paz Dec 2015 #22
Truth! When your child picks up their Walker and runs across a parking lot IdaBriggs Dec 2015 #80
Thank you, Ida, for putting your story out here. I guess you'll just have to continue step by step. NBachers Dec 2015 #23
Most welcome! And I like to think some of that was about IdaBriggs Dec 2015 #81
No- some of it's just trying to find a right & acceptable way to say shitty things to people. NBachers Dec 2015 #126
Lol! There is truth in that. Maybe we do it with our political beliefs, too? IdaBriggs Dec 2015 #129
Recommended. H2O Man Dec 2015 #24
Thank you! IdaBriggs Dec 2015 #82
What are these trace minerals? abelenkpe Dec 2015 #25
I sent you a PM as I had family obligations yesterday. IdaBriggs Dec 2015 #83
Been awhile since I've seen your name. I'll be watching for your posts Half-Century Man Dec 2015 #26
Thank you. A good friend (deceased) organized IdaBriggs Dec 2015 #84
As you have pointed out Half-Century Man Dec 2015 #99
Ida, you are an inspiration and PumpkinAle Dec 2015 #27
Thank you! IdaBriggs Dec 2015 #85
thanks or sharing, Ida--you are a woman after me own heart! librechik Dec 2015 #28
Thank you! IdaBriggs Dec 2015 #86
Good story! MaggieD Dec 2015 #29
Thank you - and you agree with the veterinary world because IdaBriggs Dec 2015 #87
Congrats, IdaBriggs. As someone who needs extra B-12 and magnesium pnwmom Dec 2015 #30
Thank you - absorption issues seem to be key in the autism subset IdaBriggs Dec 2015 #88
IdaBriggs. I remember that now! Autumn Dec 2015 #31
Thank you, and I will! IdaBriggs Dec 2015 #89
thank you for sharing. barbtries Dec 2015 #32
Thank you for reading and please do. IdaBriggs Dec 2015 #90
Wow fasttense Dec 2015 #33
Thank you and I am. IdaBriggs Dec 2015 #91
So glad you stuck with it UtahLib Dec 2015 #34
Thank you! IdaBriggs Dec 2015 #92
Good for you, Ida. PatrickforO Dec 2015 #35
Thank you for sharing your story and your support. IdaBriggs Dec 2015 #93
SO interesting. Great share. I am not a member of the preemie community, but am an avid medical/ joanbarnes Dec 2015 #36
Preach it. I have a few other examples, and have been IdaBriggs Dec 2015 #94
Good luck to you and the babies voteearlyvoteoften Dec 2015 #37
Apparently I am "somebody" - bless her wisdom! IdaBriggs Dec 2015 #95
My preemie is celebrating his 53rd birthday today! Glad all is well with you...n/t monmouth4 Dec 2015 #38
Thank you! IdaBriggs Dec 2015 #96
I am a great believer of "testimonials." question everything Dec 2015 #39
Thank you and I agree with you! IdaBriggs Dec 2015 #98
You should add a link to your OP Flying Squirrel Dec 2015 #40
The original is findable with an archive search -- IdaBriggs Dec 2015 #100
Thanks for sharing. Best of luck. nm rhett o rick Dec 2015 #41
Thank you! IdaBriggs Dec 2015 #101
THANK YOU! elleng Dec 2015 #42
Thank you! IdaBriggs Dec 2015 #102
:hug: you and your family, elleng Dec 2015 #107
Fascinating stuff. nt valerief Dec 2015 #43
Thank you! IdaBriggs Dec 2015 #103
THANK YOU for all you do & have done! K&R n/t Michigan-Arizona Dec 2015 #44
Thank you! IdaBriggs Dec 2015 #104
Keep up the great work! a2liberal Dec 2015 #45
Thank you! IdaBriggs Dec 2015 #105
You're welcome :) a2liberal Dec 2015 #122
Thanks for sharing your story and for your bbgrunt Dec 2015 #46
Thank you! IdaBriggs Dec 2015 #106
Some associated articles you might find interesting, if not helpful as well NotHardly Dec 2015 #47
We detailed out WHO and their use of Plumpy'Nut as one of the IdaBriggs Dec 2015 #108
The medical community in this country sucks emsimon33 Dec 2015 #48
I go back to my "bureaucracy not conspiracy" stance. IdaBriggs Dec 2015 #110
Post removed Post removed Dec 2015 #49
K&R... spanone Dec 2015 #50
Thank you. IdaBriggs Dec 2015 #111
Bookmarking to absorb in full later. I love good news. Hekate Dec 2015 #51
Thank you! IdaBriggs Dec 2015 #112
Brava!! marym625 Dec 2015 #52
I finally got to watch that movie this summer - the lines have NOT CHANGED! IdaBriggs Dec 2015 #113
something else you might find interesting marym625 Dec 2015 #119
k&r me b zola Dec 2015 #53
Thank you! IdaBriggs Dec 2015 #114
Somehow I managed to miss this whole thing over the years. JNelson6563 Dec 2015 #54
Truth! Thank you! IdaBriggs Dec 2015 #115
Interesting. And I would like FlaGranny Dec 2015 #56
Chromosomal abnormalities seem to be a consistent thread in that subgroup. IdaBriggs Dec 2015 #116
You found a cure for Cerebral Palsy? Iggo Dec 2015 #57
No, because cerebral palsy by definition is an incurable permanent mobility disorder. IdaBriggs Dec 2015 #117
Your situation reminds me of what happened when the Seattle doctor pnwmom Dec 2015 #123
Very interesting. panader0 Dec 2015 #58
Self correction works 85% of the time. IdaBriggs Dec 2015 #118
It is really irresponsible to keep repeating this project "success" on DU. Gormy Cuss Dec 2015 #59
This is something far more people in this thread need to read and understand mythology Dec 2015 #109
Who is going to fund research that challenges the paradigm and won't make a profit for anyone? pnwmom Dec 2015 #124
People like IdaBriggs figured out how important folate was in avoiding birth defects pnwmom Dec 2015 #121
A simple prophylactic, low risk intervention for premature infants would be worth millions Gormy Cuss Dec 2015 #133
No, it really wouldn't, because it involves preexisting supplements -- not some new drug. pnwmom Dec 2015 #134
Vitamin K shots Gormy Cuss Dec 2015 #150
In your dreams and don't I wish. IdaBriggs Dec 2015 #143
Yes, I recall. As you may remember, I have been working on this IdaBriggs Dec 2015 #128
Again, it is irresponsible for you to tout this as a proven intervention Gormy Cuss Dec 2015 #135
She ISN'T touting this as proven. She's reporting how hard she's been working to get attention pnwmom Dec 2015 #136
" 4 out of 5 see improvement" and 83% are both cited Gormy Cuss Dec 2015 #149
I kept reading the post, trying to find the proof of her numbers REP Dec 2015 #158
This is great, Blue_In_AK Dec 2015 #66
Thank you! IdaBriggs Dec 2015 #125
Holy Cats Ida!! haikugal Dec 2015 #127
Thank you! And yes, they are! IdaBriggs Dec 2015 #146
You are one awesome woman IdaBriggs! Generic Other Dec 2015 #130
Appreciate that but they kick the thread - maybe someone needs to see it? IdaBriggs Dec 2015 #147
No, the OP is the one who needs to zip it. Gormy Cuss Dec 2015 #153
Still won't sit down and shut up. IdaBriggs Dec 2015 #157
It took the American Academy of Pediatrics 14 years and 15 studies before they finally pnwmom Dec 2015 #137
Preach it. IdaBriggs Dec 2015 #148
Can you link to your 501 (c) 3? I can't find it with the IRS lookup tool or Charity Navigator. LeftyMom Dec 2015 #138
We are NOT 501(c)(3). We are a Michigan non-profit. IdaBriggs Dec 2015 #144
No, your Michigan non-profit status lapsed October 1, 2012. LeftyMom Dec 2015 #151
I'm seeing that your Michigan tax exempt status is Automatic Dissolution. LeftyMom Dec 2015 #139
You need to come to our next board meeting! IdaBriggs Dec 2015 #145
shows some foreclosure information on Zillow and Trulia snooper2 Dec 2015 #154
Sigh. Good to know. IdaBriggs Dec 2015 #155
Is this the website for the product you're suggesting people use? Because this sounds shady as hell. LeftyMom Dec 2015 #140
Thanks. Your posts and the hidden one on this thread should be read. PeaceNikki Dec 2015 #152
Wow. I wish people would read these posts. Starry Messenger Dec 2015 #156
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