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.

November 5, 2015

Simple Republican Debate: Intro to Government (College Level)

Not the simple high school test one can find here - http://civicseducationinitiative.com/take-the-test/ - those are some BASIC questions.

I want a clear understanding of the different cabinet level posts, what they are expected to oversee, some demonstration of an understanding of the complexities of our history, roles and responsibilities of different government agencies, and a few essay questions on the complicated stuff.

Forget the friendly moderators - I want a panel of college profs instantly grading their answers, and a bunch of challenging multiple choice buzzers that will instantly show which of these people have a clue, and which do not.

September 30, 2015

"Floppy Babies Don't Get Better" & My GoFundMe Campaign

I am officially asking for money for a personal cause I believe in, so if that offends you, please feel free to hit ignore on this thread.

The link is http://www.gofundme.com/idabriggs and I am looking to raise approximately $9,500 total, preferably with at least $4,300 before Friday so I can go to New York City next week, do some training on "how to deal with the media" and spend two days being interviewed by members of the national media. This is not a free event, and I believe the money will be well spent if I am able to reach the people who need to know about my efforts: mainly, families of premature infants and special needs children. So far there is over $1,400 sitting in the account.

I have been posting on DU about my efforts on behalf of the Preemie Growth Project since 2009. I have been a member here since 2004, and some of the old-timers may remember my postings about my challenging twin pregnancy and the amazing awesomeness of my beautiful twins who arrived in February of 2007 weighing in the 4-pound range, delivered after an emergency c-section at 32 weeks due to pre-eclampsia. But that was only the beginning of my journey, because my twins started achieving normal growth and developmental milestones in a matter of months instead of years, and I figured out why and then proved it could be repeated for other premature babies.

In 2011 my efforts on behalf of this outreach (I started jumping through hoops to get my conclusions investigated by credentialed researchers back in 2009) bore unexpected fruit with a young "floppy baby" who began responding to the protocol within a matter of days. I was told repeatedly in the most condescending manner possible that "floppy babies don't get better" (except this one did, and so have a whole bunch of others since) and truthfully, almost walked away from the effort in frustration, but in 2012 a 9-year old girl diagnosed with cerebral palsy got up out of her wheelchair/her hyperspastic hands normalized in sixteen week, and the next thing I knew I was accidentally running an impromptu parent led feasibility study with 271 children from 35 states/6 countries, fighting flame wars on DU that still sting to this day and figuring out the particulars for a commonly undiagnosed medical condition responsible for the deaths of infants and children worldwide, that was literally leaving the survivors in wheelchairs, and appears to be responsible for a high percentage of sensory processing issues, including in an autism only subset.

Solid data was obtained on 134 of the children recruited, and 111 of them (83%) saw improvement in a minimum of four of the eight categories we tracked. That meant that 4 out of 5 children responded to the protocol - for children born prematurely, 9 out of 10 them responded, while non-preemies only saw 8 out of 10 respond. 33 boys under age 4 *ALL* responded, leading me to suspect that boys are more susceptible to these deficiencies. My co-author and I were privileged to share the results in a presentation we made to the Michigan Department of Health & Human Services last week (September 21, 2015), and you can view that presentation here:

https://onedrive.live.com/view.aspx?resid=AA4BA6ADFA380C7F!181&app=PowerPoint&authkey=!AKUdPc8LiR5ndI8

It may be idiotic (heaven knows my personal budget thinks it is), but I have always done this as a volunteer thing, and received zero compensation for it. I have devoted full time effort to this since January after a "blessing in disguise" situation occurred and I was laid off in December from my contract IT position at one of the automotive companies; I thought I just had to finish the report, and I could put the whole thing to rest, and then it was "just do this research poster" and then "just do this presentation in Lansing" and...the reward for a job well done always seems to be more work! Lol!

I am luckier than most in that my beloved husband has been extraordinarily supportive of my efforts, but we are used to being a two-income household, and while the sacrifices I have made may seem mild to others, they are real to me. At the end of the day, I cannot justify asking my family to lose $9,500 from our family budget so I can go to New York City so I can "spread the word" that SOME children with neuromuscular issues may actually be misdiagnosed and suffering from correctable micronutrient deficiencies.

So, I am asking for help. I don't sell ANYTHING. I have never charged a dime for my information and/or knowledge. If I don't raise at least $4,300 by Friday morning, I will have to wait until the next event happens in April, and that is an opportunity cost in unnecessary loss and suffering that makes me cringe.

If you can donate, please do so. If you are willing to share the link, please do so. If you can only offer up positive thoughts or prayers, I will take them as well. If you can only kick this thread, I will accept that with gratitude. And if you, or someone you know needs this information, I will be happy to answer your questions (but please do me a favor and look at the presentation first - I am working on a more "parent centric" shorter version, and hope to have variants done before I head off to New York, assuming I am able to do so).

Thank you in advance, DU. This matters. Please help. Thank you.

Again, the GoFundMe link is: http://www.gofundme.com/idabriggs

September 16, 2015

Woo Hoo! Our favorite state sex scandal made it to HBO!

Yeah, John Oliver!

And for non-Michigan residents, the Franklin Cider Mill is awesome!

September 15, 2015

Oh. My. Goodness! HOW Did I Miss This in 2011?

DUer "phantom power" posted an AWESOME thread about President Obama DESTROYING birther fan Donald Trump at the White House Correspondence Dinner in 2011 while behind the scenes he had the U.S. military busy taking out that guy who ordered 9-11. Apparently, Trump was Not Happy and the thread by "phantom power" discusses the titillating rumor that Trump is really running because Obama is a Meanie who Laughed at him.

You can view that thread here: http://www.democraticunderground.com/10027172324

But it sent me on a hunt for the YouTube video, and it is AWESOME, MUST WATCH, HYSTERICAL...

Enjoy! I did!

August 13, 2015

Practice Presentation in West Bloomfield, MI EDIT: AUGUST 26, 2015

This is the "big presentation" we will be making for some VIPs in Lansing in September, and represents the last six years of effort on my part. The topic is dry, so we will consider it a success if anyone other than family shows up. If you can't make it, please send some good vibes our way, please. Oh, and if you want a sneak peek of the presentation, send me a PM and I will forward you a link - bonus points if you can find the two typos we've already caught!

August 6, 2015

It has been a rough couple of weeks. **UPDATED**

I have been dealing with a young (23 years old) family member who appears to be suffering from an undiagnosed mental illness.

On Tuesday I stood in front of a judge with copies of half a dozen police reports to explain why I am legitimately in fear of her harming herself or others. The reports range from an "abuse/neglect" case involving her then boyfriend causing her 22-month old son to require brain surgery (the baby is now in the care of her mother, or as the family member calls her, "the devil&quot to larceny charges incurred by stealing from her 74-year old grandmother, with a bonus "kicked the window out of a police car when placed under arrest", through last week's suicide threats, which she made multiple times but denied when questioned by police officers.

The judge signed the order very quickly. I don't think the suicide plan from last week (two days of hell that started when she was fired after eight days on a job due to "attitude&quot was what did it, or the menacing/breaking the "no-contact" order with the grandmother; I think it was when I explained that foster care had put in a "no contact" order after she had verbally abused her mother in front of them by stating "you used your vagina to put a roof over our heads, and I am not going to do that." Do I have to add that her mother is an office worker/not a sex worker?

She and her partner - her baby's father, not the boyfriend who put their son in the hospital - are currently homeless/living in her car. He works at McDonalds. Family cannot / will not take them in due to her unpredictable mental state. She verbally abuses her partner at levels I simply cannot comprehend, and nearly brags about how she has at least six domestic violence reports against him from when they lived on the other side of the state. She waved this in front of me during our last talk as her "security" - she told me she could always go to a domestic violence shelter, and they would take care of her. Her partner would have no shelter or transport, and is controlled by her as a result. (They only have one incident together here - her trying to get her grandmother arrested by hitting herself in the face/claiming grandma did it doesn't count, right?)

My plan was to have her escorted for evaluation at her next court appearance (Thursday morning) but she found out Wednesday evening. A very nice deputy took the paperwork and escorted her to the facility; he then explained to me that she and her partner didn't want any further contact with me, and if I did attempt to contact her, I could be charged with harassment. They were done with me now.

I nearly burst out laughing, but contained myself lest it become hysterical. I had already dealt with her earlier screaming threats aimed at me and my children ("I will ruin your life! I will open a CPS case! I will make sure you regret this forever! You are a liar! You said you would help me! I have always triumphed over my enemies and I will triumph over you! I will destroy you!" Etc.) so my instinctive "Promise?" is understandable, but I did not say it out loud. I heard "stay away" multiple times during the suicide drill, and she texts it frequently in between asking for help/meeting for meals, etc. This was the first time a police officer had relayed the message, along with the implicit threat, and I was torn about asking him just how seriously he was taking it, considering the place where we were at and the paperwork he had seen?

But I didn't. I could see doubt in his eyes - she can present "calmly" on occasion, and maybe he thought she was being persecuted or something. Heaven knows she does. I finished making sure the staff was aware of her issues by high lighting important bits, and left. HIPPA means I will have to rely on others to know whether they decide to keep her for more than 24-hours. She had told me she would kill herself if she was forced into a hospital, and I am trusting they can keep her safe. I had made arrangements for her boyfriend to have shelter (the car is hers and he has no license/his last arrest was for driving on a suspended license), but after the policeman's warning, I didn't call him again. (I did make sure the helper had his number, so hopefully he is going to be okay.)

It has been a rough couple of weeks. I did not take this step lightly, and am confident it was the right decision. The up/down mood swings have been getting shorter in duration and more violent in intensity. She cannot understand why the world isn't working the way she expects it to - she *knows more than EVERYBODY* and they should listen to her! - and when they don't, when the police officers and the doctors and the lawyers and the shelter workers and the social workers and her supervisors and anyone in authority tries to tell her how to behave, or that her decision making might be in error, she just cannot Get It and she explodes in epic verbal tirades. The number one question every time law enforcement has had to deal with her: is there a drug problem? And the answer is no, we don't think so - she is tested regularly during the supervised visitation, and also during the week she spent in jail last month. It doesn't seem to be a drug issue, and she is in the age range when these types of issues traditionally start to manifest....

I am left with the questions that have me awake and posting on a message board in the middle of the night. Will she be able to fool them? Am I wrong about her being mentally ill? Will they be able to help her? Only time will tell.

It's been a rough couple of weeks....

ON UPDATE: They released her within hours. The cycle continues....

Thank you, everyone for your support. I wish there was a better system for getting people who need help what they need.

July 9, 2015

Because seeing your dad HIT YOUR MOTHER is no reason not to have lunch with him.

According to the story, the CHILDREN are represented by attorneys (court appointed) who did NOT object and in my opinion need to be fired.

The judge is an idiot who apparently doesn't understand how victims of abuse can be angry.

After all, it is just their MOTHER. He loves them, so what's the problem?

July 3, 2015

Almost told an alerter to perform obscene acts on himself.

I was more offended by the alert than the post being alerted on.

Kept my cool, and hoping for a 0-7 keep it.

Jury duty.

Grrrr...

June 29, 2015

Can someone explain this hidden post to me?

Apparently four members of our community found it outrageous enough to be hidden and I don't get it:

http://www.democraticunderground.com/?com=view_post&forum=1002&pid=6913982

For those who don't want to click the link, let me share the context, because this one is a DUzy:

That's it. A bunch of PERIODS. Apparently, similar posts weren't offensive because they were allowed to stay, but this one: HIDDEN.

Yes, a DUer just got a HIDE for what appears to be the crime of "gratuitous kicking" of a thread I wrote on June 5, 2015 that received (as of now) 355 RECS, 680 REPLIES, and nearly 20,000 VIEWS.

Apparently, the fact that at least ONE DUer did not want the discussion about NYC_SKP, Internet reputation and the value posters bring to a forum to end meant the jury system had to be abused.

Or maybe these are the community standards? After all, just because the poster who provided the catalyst for my post had been here for years, donated money to this site, and posted tens of thousands of times, is really no reason to keep POSTING about it, right? It was, like, THREE WEEKS AGO so let's all just MOVE ON and throw a jury hide on anyone who thinks the issues I raised in my post The latest "banning" (NYC_SKP) is an interesting lesson on REPUTATION. http://www.democraticunderground.com/?com=view_post&forum=1002&pid=6783883 were worthy of further discussion.

Look! SQUIRREL!

Walk me through it, please. I think I get it, but I really want to be wrong.