I think I figured out to help fix heart failure. I deserve an attagirl.

[IdaBriggs]

I told my husband, and he said "well, duh!" He didn't even seem that impressed. I think it is kind of a big deal.

Meanwhile, as the brainstorm hit, I let loose a string of obscenities because HOW COULD I NOT HAVE FIGURED THIS OUT ALREADY???

So, here it is: one of the factors we can't control for heart disease is "heredity" - in other words, if you have a family history of heart disease, you are at increased risk for it. (Duh.) Things you can control include your diet, your weight, your exercise level, smoking, etc. (Yes, everyone knows this.) But everyone agrees you can't control your family history - it is what it is.

Now, the hypothesis we have been investigating is that certain forms of neuromuscular issues, including cerebral palsy and sensory processing issues, are caused by micronutrient deficiencies either caused by prematurity/IUGR, maternal deficiency, exposure to teratogens and/or childhood absorption issues during periods of rapid growth. Bluntly, it looks like there was some confusion as to which came first in the classic "chicken versus egg" issue, and it looks like the micronutrient deficiencies occur FIRST (before the "brain damage&quot , and the "symptoms" include hyperspastic / hypotonic symptoms, developmental delays, sensory processing issues and failure to thrive (among others). More importantly, correcting these deficiencies (really easy to do and cheap - NO I DO NOT SELL THIS STUFF) for four out of five children appears to result in dramatic improvement / reduction of these issues, with added bonuses of improved cognitive and communication skills, too (and ADD/ADHD symptoms reportedly decreasing in many cases).

There is more to all of this but I am trying to explain it all in its most basic terms, which comes to this:

Nutrition matters, especially when pregnant; the guidelines include "healthy food" like spinach and eggs and lean meats NOT just because of the calories, but because of what is in them - the vitamins *and* the minerals. (But sometimes it doesn't matter what you eat - see IUGR; not trying to "blame" anyone for anything here - the baby needs what the baby needs, and if they don't get it, bad things happen.)

So I am mentally working on my presentation which I have to do soon, and I start thinking about "other applications". The kids who are improving are seeing increased strength (it begins with head/neck and trunk, then spreads to extremities). With the babies, it is easy to see because *everyone* knows the order of milestones, so when a baby *isn't* meeting them (reaching out, supporting head, sitting up/turning over, etc.) it is obvious, and an immediate cause for parental anxiety. Plus "failure to thrive" is *really* an easy thing to identify, and I am trying to put stuff together in a coherent way to show how easy zinc deficiencies can be tested, and politely point out if a child won't eat (usually zinc) and is on medications that cause problems (miralax and antacids) with absorption, then odds are good they aren't ONLY deficient in the ONE or TWO things they were tested for because they are probably deficient in a whole bunch of OTHER things too (because that is how these things work). Anyway, for the children who respond, the babies are usually quick with gaining healthy weight and milestones are great measurable, while the older children (pre-puberty) who also respond see the same pattern of bowel change/appetite increase/weight/strength/etc. When it works *really well* the "symptom" of "weak muscles" goes away. (Example: one child at age five required assistance going up and down a flight of stairs; six weeks on the protocol he was climbing the monkey bars - it doesn't work that fast for every kid, and it doesn't even *work* for every kid, but -- I digress.)

So, I am mentally working on the "other applications" for future research *if* this continues to pan out the way it looks like it is going to - trust me when I say this level of breakthrough is a big deal, and the amount of skepticism and double checking that *needs* to happen is well warranted and beginning. It can get frustrating at times, but ANYWAY --

Muscles get stronger. THE HEART IS A FRIGGING MUSCLE!!! And we know (as well documented in the veterinary research) nutritional deficits during pregnancy impact two generations down in health.

So, if "heart disease" runs in families, that probably means the "families" all eat the same types of food from the same regions (which may or may not contain all of the micronutrients required for optimal health depending on the quality of the food supply available). And we also *know* that the ability to *absorb* some of these micronutrients decreases with age / quality of intestinal flora, etc. which means the ability to *absorb* the micronutrients from the food supply is impacted, too.

Which means if we "know" there is a family history of heart disease, and someone has a "weak heart" and if micronutrient deficiency issues really *ARE* involved (because I could be wrong), then correcting the deficiency *may* increase the strength of the heart muscle Just Like It Is Doing For (83% of) My Neuro Kids.

It isn't just the calories. It is what is IN THEM that counts. Food matters - and the food your grandmother had access to may account for "heart disease" -- and *maybe* if we identify and correct these deficiencies (which can be helped by looking at "family history&quot then *maybe* we can help fix heart failure.

It may be a "duh!" moment to my husband (who has been forced to listen to this stuff for the last several years!), but I think I deserve an "attagirl."

Yeah, me!

Sigh. I do not have time for this. Back to work....

[malthaussen]

1. Attagirl!

I have found that most of my best ideas generate eye-rolls from the people close to me specifically for the reason you mention, they get to hear the idea from infancy. What matters is who else you can convince to listen.

-- Mal

[IdaBriggs]

2. Thank you - I don't even have a clue as to where to start with *this* one.

Plus I am still in the middle of the other (and confusing them with 'and see, it fits here, too!' will probably make heads explode even more!). Maybe someone else will see it and take over. My plate is full.

Apologies in advance to those affected by this.

[mnhtnbb]

3. Attagirl!

I understand what you are hypothesizing...and agree with you that what 'mommy' eats-- while
pregnant-- could have repercussions for generations to come.

I don't want to rain on your parade, but my fear is what kind of planet earth the children
will inherit two generations down the road. It seems as though too many people today
don't care!

[astral]

4. Mineral supplementation can "prevent" many common diseases in the US.

I think what the mother consumes during pregnancy has a bigger affect on her fetus than genetics, but it's more than prenatal vitamins, we are all lacking in the many trace minerals that used to be in the soil and hence in our normal food supply. And we used to eat mostly plants rather than mostly packaged foods.

My amazement isn't so much that people don't know about supplementation but that we may well know it but don''t practice it. We take our health for granted until something threatens it . What's in the calories! Bingo!

If we concern ourselves more with what we ARE going to eat not with what we 'can't' eat, we'd be so much better off. Consuming something just for fun because you like the taste of it is fine if you already ate what's good for you, I find that I don't crave cr@p foods much if I am eating healthy.

[IdaBriggs]

7. Truth. nt

[NealK]

5. I can cure cancer.

All you need is one cup of chicken blood, the dart of a scorpion and dragon milk. Put everything in a blender and voila! Cancer cured.

[IdaBriggs]

6. Thank you for the kick and the smile.

I did have the opportunity to discuss this with an "over educated crowd" Friday night, which was interesting. The topic of Depression Era babies/grandchildren and the nutritional impact that period had on our current health care costs was brought up. Fascinating stuff.

[trof]

12. Wrong. It's the 'claw' of a scorpion.

And one cup of Greek yogurt.

[NealK]

8. You're welcome.

I love exposing crooks.

[IdaBriggs]

9. Ah. The implication being that you think "I" am a crook.

You are an anonymous person. My name is the same here as it is on Facebook as it is on LinkedIn as it is in the *many* places you can google me. I have been interviewed by reporters (http://www.growingyourbaby.com/2012/09/18/micronutrients-said-to-help-preemies-may-also-help-children-with-cerebral-palsy/), speak regularly with professional researchers all over the country on the topic (it is WAY too big for one person, thank you very much), explain the protocol/concepts/concerns to health care providers on behalf of parents regularly, and have begged funds from family and friends (after my husband financially cut the Project off because as he put it, "we can't afford to save the world&quot to try to help hundreds of children. I have received no financial compensation in any shape or form to the point of foolishness and you think YOU calling me a crook, oh ignorant one, matters other than making you look like a fool to those who know what the heck is going on?

You believe the fact there is a non-working donate button on our page makes me a crook? Personally, I think it just makes me look disorganized and overworked - the whole page needs a good update/overhaul to reflect what we have learned in the last year, and I have not made the time. (Now THAT is a crime you can lay at my feet with justification - prioritiziationissues; guilty as charged. Sigh. My six year old son is sitting next to me wanting some attention and/or the IPad, and I am telling him "just a few more minutes" while I respond to your slurs. His twin sister is watching television - yes, I am Mommy-of-the-Year. Sigh.)

Do you honestly believe that figuring something out of this magnitude - that neuro issues ranging from hyper spastic and hypotonic symptoms through sensory processing and developmental delays which also affects infant mortality and failure to thrive explained using existing research, can be prevented, and even corrected in a matter of months following an inexpensive, already available protocol with dozens of companies already selling it under different brand names over the freaking counter means the extremely conservative, slow moving, cautious medical community is just going to jump all over this because four out of five times it works?

Dude, that was *me* back in 2009 - "everyone wants to help babies!" Uh, no - there are lots of people very concerned with earning their daily bread, and not so concerned with their "mission" (ask me my opinion on the good folks at "March of Dimes" and how much energy they spend raising funds to pay the people who are raising funds; and the regular jokes about how the lawyers are going to take a hit out on me because they get a cut of those "lifetime cerebral palsy lawsuits" really aren't as funny as you think they are).

People know what they know. The politics involved in the research community is cut throat. I am an outsider. The financial stakes are high - want to know how much I have to raise to get a table at the conferences coming up to *tell* folks about this? I should be at four conferences in October/November, and I don't know how/if that is going to happen. It is $2K per conference - and NO, they don't let you come for free just because you are a non-profit. (They use the vendor room to pay for the conference space.) Then there is my lodging and transportation, plus my time away from work (I work 40 hours a week, and when I am not there, I don't get paid - plus, husband who also works full time job, and did I mention my six year old twins?) - so I can go as a VENDOR WITH NOTHING TO SELL (seriously, ZERO financial interest) and explain how applying the information in the medical textbooks - just like the veterinarians do - is "kind of" a big deal. I have to explain these concepts in a way that makes sense - "nutrition matters" - deal with the politics of the fact that they specialized themselves out of fixing it for FIFTY F*CK*NG YEARS (neurologists think neuro issues are only brain related while gastros only deal with belly issues - who knew what you put in one affects the other?) ---



So, NealK, thank you for the energizing balm of a good rant on a thread that will sink into oblivion. I don't know what "real world" credentials you have, but I could use some help over here moving a few mountains. PM if you want my contact information - it is pretty easy to find - or just play "skeptical keyboard commando" with the insulting slurs. I have work to do.

Oh, and if you have a family history of heart disease, get yourself to a local health food store, and tell them you need some "trace minerals." Buy enough for about four months (take double the adult dosage if you are already having issues or have immediate family with symptoms) and get back to me about whether it helps or you start feeling better. I have no evidence, but it makes logical sense, so someone should probably investigate. Right now I am busy with other things.

Have a good day, and again, thank you for the tension release - arguing on the Internet with people who don't matter in my life is apparently my favorite form of recreation.

Sigh. I am apparently not that bright.

[vanlassie]

11. How Rude.

What have you done of value lately?

[IdaBriggs]

20. Thank you for noticing.

[DFW]

10. Speaking as one who had the narrowest of escapes from heart death.......

I can give all this a definite maybe.

My mom had elevated cholesterol which eventually killed her at age 75. Both my dad's parents died of heart attacks before reaching 70. I nearly died of a massive heart attack at age 52 (I escaped just before it happened). It's hereditary, alright. I don't break down cholesterol.

I noticed my symptoms in time and sought out a cardiologist on pure suspicion. He freaked out and sent me up to one of Germany's best cardiac clinics within hours. The head professor confirmed the cardiologist's suspicions, put me on the table immediately, put in two stents, and told me I was the luckiest guy in Europe that day. He then summoned my wife and told her all the things I was not to eat any more: mostly stuff I loved. Eggs, ice cream, butter, shellfish, cheese, coconuts, red meat---all on the taboo list. The cardiologist's classic admonition: "If it tastes good, SPIT IT OUT!!" Now, it's fish, leafy greens, fruits and grains, and sinning only on special occasions (got my LDL down way under 100 and HDL up to 50% of the LDL count).

I was put on medication, dropped all the good (i.e. bad) stuff from my diet, and my wife and I learned to cook with olive oil instead of butter. I did have the good fortune to be married to a master chef, so she makes stuff taste good even if it's OK for me to eat. I didn't have a heart attack until 2 years ago, when a surgeon told me to go off blood thinners for ten days before a minor procedure. WRONG. In those ten days, one of my stents clogged right back up, and within an hour of being released, I was on my way to the emergency room in Dallas with my very first heart attack. Luckily, it was very mild and left no muscle damage. Angioplasty blew out the blockage, and I was warned never to go off the blood thinners ever again.

So, it's no guarantee that diet alone will save anyone. It's no guarantee that medication alone will save anyone. But what's for sure is that anyone who knows they're in a danger group CAN do something about it. Mother Nature had me scheduled to check out permanently on or about April 29th, 2004. But I beat the reaper (apologies to those who remember the Firesign Theater). I intend to press my luck for a few decades longer if I can get away with it. If not, well, my demise is already nine years behind schedule.

[IdaBriggs]

18. So glad you are still with us!

I know we have "brain damage" symptoms reversing (clonus), and "weak muscles" getting stronger, but whether this can "turn on/off" genetic markers like breaking down cholesterol - no clue.

However, my dystonic population has seen very mixed results; it appears that magnesium is a "major" deficiency for them BUT until we get the "base" missing trace minerals in them, they can't get/process what they need if it the "only" thing given. (Once they can, the extra magnesium also helps with the constipation problems that make so many of our kids live on miralax, which causes more problems because it interferes with lower intestine absorption issues in adults after seven days.) And your case brings up another thing - just *when* did you start not being able to deal with the cholesterol? Was this a lifelong issue when you were a child, or did something happen to kill off the stuff that helped you process the things you needed --

It is truly an interesting thing, and I hope someone looks into it. In the meantime, very happy you are here still!

[DFW]

21. Thanks! So am I!

I suspect, although can't know now, that I started getting clogging early on. A friend of mine who studied medicine in London and Brussels told me that when they performed autopsies on the cadavers of young fatalities from traffic accidents, some of them as young as 20 years old already showed the beginnings of arterial clogging.

Another thing...I have relatively low blood pressure (110/70 at rest) and didn't feel the angina I would have had I had higher BP, so I didn't notice a thing until it was almost too late. After the successful stent implant in 2004, the whole thing was conducted in german until afterward when the professor made his only comment in English (he knew I was American): "Just in time."

[trof]

13. Nobody reads posts more than 3 paragraphs long.

Get used to it.

[IdaBriggs]

17. Lol. It's okay. Rough week.

Sometimes I post just to document - and maybe someone else can investigate?

[mentalsolstice]

14. Maybe some of us don't want to be "cured!"

Last edited Sun Sep 8, 2013, 10:44 PM - Edit history (1)

I'd rather have research dollars go to helping us live "as we are." I'm more into acceptance for persons with disabilities and allowing us to move around in our society, rather than preventing our existence. Maybe your minerals can prevent a few of us from ever being born, but guess what we'll always exist no matter what. Once we're born, we're here, with no cures.

Go spend a few minutes with your twins, and realize that they're one illness or accident away from being disabled, and there will be no cure...just an effort to get health care providers, schools, family and friends to accept them as they are. Yeah, go try that...

Edited for grammar and the hell of it.

[astral]

15. i dont understand

... why people have to stoop to getting ugly with each other over a simple thread started to have an informative exchange of information. there is something to learn here, not something to fight about. the different perspectives are just pieces of the same puzzle. i would say if the minerals may help you and wont hurt you why not try them? your life might depend upon it.

[mentalsolstice]

16. The OP Has a History

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=439&topic_id=795074&mesg_id=795074, read it and weep. As a disabled person, I'm supportive of preventive research. However, more money needs to go to adaptation and education towards acceptance of persons with disabilities, because we'll always be here as long as humans exist...just like we need to combat racism and homophobia. What the OP offers isn't a cure...but for most disabled persons a cure is not what we need nor want, we just want a foot in the door to regular society. We're already here, whether it's by birth, illness or injury.

And I'll risk getting juried here, the OP is selling minerals without a bona fide medical study or testing.

[IdaBriggs]

19. June 8, 2012. That was the day the world changed for me.

That was the day the 9-year old neighbor girl who was pretty much confined to a wheelchair, with a list of problems, who had never been able to use her hands to either feed herself or take care of her own bodily needs, proudly stood up for twenty minutes, bragged about her cognitive improvement (in six weeks she went from not being able to "remember" the alphabet to doing spelling tests), and showed me how she could wiggle her fingers. She had also gained six pounds in about six weeks.

I knew pretty much next to nothing about cerebral palsy - we had a 9-month old boy who was supposed to be a quadriplegic gain ten pounds and start walking in ten weeks the previous year, but the "experts" said he was misdiagnosed.

So I came to DU to ask; my preemies don't have these problems (which makes sense now) and finding someone with a dog in the fight (so to speak) who could explain what was happening, or if it was as significant as I *thought* it was seemed sensible. I posted, no one responded, and I got busy with the rest of the day. I came back to the thread to find all heck had broken loose, and one person in particular started a couple of meta threads about it. The concern was that I was going to take advantage of a vulnerable population by offering hope where there was none. Plus I obviously am not a doctor, so there was a contingent who were offended by the fact this wasn't coming from the medical community. The name calling was fierce, and I am a pathologically honest person. As I asked in one of the meta threads (when I was told what I was reporting was "impossible!&quot "who should I believe, you or my lying eyes?" (So glad I made the video - at sixteen weeks, her hands were completely normal!)

There was no question the neighbor was / is misdiagnosed. And the kids who are getting better - well, "breakthrough in understanding" is an understatement. I don't have all the answers - with 121 kids seeing improvement, I have 40 children who didn't, and that is very hard to deal with; I am an IT person, and while the medical folk assure me this is good (83%), in IT world, anything less than 100% equals failure.

I tell you this, because there are still hard feelings, and those convinced I was selling "snake oil" (:eyes became extremely ... hostile in their comments in an effort to protect people they thought I was trying to take advantage of. I even ended up putting one person on ignore due to her poor behavior, but truthfully, I owe her thanks: she explained a lot about the condition, and helped me to both understand the significance of what was happening and the wall of resistance explaining the findings was going to entail dealing with. Ignoring her is probably still the best way to go, but part of me wants to let her know she helped a lot of children in a peripheral way.

I shouldn't have lost my temper earlier, but as I said, sometimes venting on the Internet is the way to go. I am human. I appreciate the support. And I apologize if my rant made this thread unpleasant. I think this will have significance in other areas than neuromuscular, and turning things on/off (like the ability to process cholesterol) based on what we put into our bodies seems extremely exciting to me.