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"Its not easy being a messenger of God." Yeah, I said it to my mother yesterday.

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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 03:42 AM
Original message
"Its not easy being a messenger of God." Yeah, I said it to my mother yesterday.
And this post is going to have some faith stuff in it, so if you can't cope with the concepts, move along, please. :)

Yesterday was notable for two things: the first being my mother, after suffering with "unexplained" excruciating back/hip pain finally went to a chiropractor (more on that in a second), and secondly, for my conversation with a noted veterinarian/doctor, who calmly explained why what we had done for my premature twins made perfect sense, why it worked, and a little bit of why I can't get anyone to pay attention.

I'm going to start with the story about my mother. She's in her sixties, and about six months ago, her hip started bothering her. She has been previously diagnosed with rheumatoid arthritis, and my father (deceased) worked in the auto industry, so she's always had good insurance, which means she went to the doctor. She told them her hip was hurting her, and they told her it was from her back. They gave her physical therapy, cortisone shots, muscle relaxers -- you name it, she tried it.

FOR SIX MONTHS. And nothing helped. Sometimes the pain was so bad, she was near tears, and could barely get out of bed.

I told her to go see a chiropractor, specifically, one I have a lot of experience with who "fixes" problems and doesn't milk it (because yes, there are actually both kinds out there -- no insult, and your mileage may vary).

Anyway, for six months she suffered, and I would periodically offer up what I thought was a logical solution; in my opinion there is a time and a place for all kinds of medicine, but this one seemed pretty clear cut. But she wasn't comfortable with the idea, and frankly, "you can lead a horse to water" etc.

Finally, in pure desperation, she agreed to go. And he took an x-ray of her back/hip (the first time anyone had done that, despite her saying the same thing over and over to all of the doctors and specialists), and it was pretty freaking obvious on the x-ray what was going on, and he "whacked" her back/neck, and BOOM.

She was fine. Stood up, right there on the spot, FINE. He told her he'd see her in a month to make sure the adjustment "held" and also told her that a lot of people ended up with hip-replacements when their (blah blah doctor stuff -- yeah, my eyes glazed over; I turn the engine and my car works; I see the doctor, and he does doctor stuff, and my body works better -- its the middle of the night, and I want to get to the rest of my story).

After we left, we had a discussion on the spiritual aspect of the situation: she'd been praying for six months for help/relief of the problem she was experiencing, and I'd been telling her about the solution, but because she was afraid, she hadn't been willing to listen. In essence, I joked, I was a Messenger from God. "But I didn't recognize you as such," she played along.

"Yeah," I told her. "I get that a lot." And we laughed. Only I was a little serious. Its not easy watching someone you love be in pain, especially if you are convinced it is unnecessary and easily fixable. :)

Which brings me to my second story, and the mission I've been on for the last couple of months.

My twins were born prematurely. (I've talked about that here before. http://www.democraticunderground.com/discuss/duboard.ph... ) And they've been "caught up" since they were four months old Actual/two months old Adjusted. Its unheard of -- most preemies catch up, but usually it takes them a couple of years.

Mine did it in two months.

And yes, it appears they are going to be "special needs" but only because it looks like they are going to be little geniuses. (Don't all 2-1/2 year old kids count in multiple languages? Insert eye roll here.)

Anyway, I am pretty convinced I know exactly what we did to achieve this "miracle" and it involved a $20 bottle of minerals. My pediatrician and preemie clinic have all been appropriately stunned, but are caught up in the day-to-day stuff, and aren't investigating, so I trotted off with my information, and have spent the last two months trying to find someone to investigate. (I am not a medical professional; neither is my husband.)

I have been in contact with the March of Dimes, the formula makers, doctors from noted institutions, the folks who keep the stats on infant death rates (prematurity = #1 cause), and a host of others. My story makes people happy, because most preemie stories don't end with "my special needs are happy, healthy, top of the growth chart genius babies," and they smile, and MOVE ON to their normal lives.

If I wasn't a stubborn woman, I'd have thrown up my hands in disgust, and MOVED ON myself. After all, I've got my healthy babies, and all I have to do is forgot the rest of the folks in the NICU.....

And then I pick up the phone, and find someone else to call. Sigh.

Yesterday I spoke with a noted veterinarian/doctor, who very calmly explained that, in essence, I had a small litter (he said RUNTS!), and that by addressing their nutritional needs, I caught them up. He said it was something vets see all of the time, and I found myself nodding, because, after all, we did puppy rescue work (87!), and I saw the "runts" catch up, as long as they didn't have to compete with their larger siblings for food. Heck, anyone who has ever seen "Charlotte's Web" should get it!

But the very folks who pray for ways to help preemies aren't listening to me (or the good doctor I spoke with yesterday, who has apparently been trying to get through to them for 40 years that NUTRITION IS IMPORTANT).

They don't see me as a "Messenger from God." Or, if they do, it just sounds too easy: 1/2 a teaspoon, once a day, and BOOM! Problem solved.

Don't get me wrong: I am not naive enough to think this stuff will fix birth defects, brain damage, or fight infection -- I just know that larger lungs meant winter colds were inconvenient, instead of life threatening; muscles meant they could hit normal milestones, instead of having to play catch up, and feeding their brains probably helped with my genius problem.

But the first thing that has to happen is for someone to "investigate" (which means do a scientific study) to determine whether or not we are "just" miracles, or whether this miracle is the best kind -- the repeatable one.

And folks, I'm getting stumped as to how to get the attention of the person or people who can do that study -- someone credible, who has access to the resources to track the participants (which is apparently going to be the hardest part!), and knows how to get through the hospital review boards with all of the paperwork associated, plus the recruitment of the participants (because telling preemie parents you want to "experiment" with giving them some nutritional supplementation can be pretty darn scary) and half a dozen other logistical issues, especially when they are dealing with other important things --

Yeah, its going to be a challenge. Not an impossible one, but a big one. I guess most life changing things are that way, and for a whole bunch of preemies, this is going to be important. Someday, it will most likely be just "common sense" -- ("of course you provide trace mineral supplementation for preemies"), but right now, I'm just a woman in the wilderness, jumping up and down yelling, "HEY, MAYBE SOMEONE SHOULD COME TAKE A LOOK AT THIS!"

Like I said, its not easy being a "Messenger from God". But I asked, I was answered, and I've been blessed. Maybe I'll shut up later. But for now, I'm going to hit "Post" and politely ask this community --

Are any of you holding the answers I'm looking for? How can I get this information to the people who need to see it? Can anyone help me get a medical study done on "Trace Mineral Supplementation and the Premature Infant"?

I am a woman of faith. And I am grateful for the gifts I have received. I know the answer is out there. Can any of you help me, please?
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Rabrrrrrr Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 03:49 AM
Response to Original message
1. It amazes me how, in this day and age, the medical indsutry still seems to poo-poo nutrition
as a viable medical path of goodness.

I guess because "nutritionists" don't have M.D.s, that they get ignored. Granted, a lot of so-called "nutritionists" seem to be of the "Dude, all you need is bee pollen and a daily colonic" types; but clearly there are a lot of legitimate ones, and even more clearly: WHAT WE PUT INTO OUR BODIES HAS A GIGANTIC IMPACT ON HOW THOSE BODIES FUNCTION!

Seriously, who needs an M.D. to figure that shit out? I mean, fuck, come on people: Auschwitz versus Michael Phelps. It's not fucking rocket science.
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:02 AM
Response to Reply #1
4. You would think! LOL!
I ended up in a flame war on a PREEMIE SUPPORT BOARD (!) over this stuff last year. Later, someone actually suggested I had given my children "brain damage" with this stuff. Last year I walked away; this year I am not.

Oh, and there was one woman on the Preemie Support Board who was talking about giving her child LARD WITH SUGAR (oreo filling) to increase their calorie intake. I very politely tried to point out that HEALTHY weight gain in children wasn't just a matter of "calories" but the stuff that was in the food -- as in, the vitamins and minerals in vegetables are GOOD for us, and if only "calories" mattered, we'd all be on the "Ice Cream/Chocolate Cake/Potato Chip ONLY" diet -- but this bit of common sense seemed to be beyond what stress levels could cope with.

I understand why the Preemie Parents didn't want to listen to me; I am NOT a medical professional, which comes with a whole lot of (earned) credibility. Its why I am asking for this stuff to be investigated.

After all, maybe it was all just Luck. (In which case, I want someone to investigate how to make that LUCK repeatable, please.) :)
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notadmblnd Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 03:54 AM
Response to Original message
2. medical schools, nursing programs
Edited on Tue Aug-04-09 03:55 AM by notadmblnd
get in touch with nursing or medical students or maybe even people who re studying nutritioin. I'm sure they have to do research and write papers, you could offer them your thesis. I know Baker college and OCC both have nursing programs. The hospital at U of M is a teaching/learning hospital. Maybe go in that direction?
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:29 AM
Response to Reply #2
10. What I seem to be encountering when I do this with noted hospitals --
Is that folks are busy doing their "daily jobs". They are interested, but they seem to do a quick google of the internet to see if any other studies have been done (zip, zilch, nada), do a "huh, that's interesting" and assume that since no one else has investigated, its probably not that big of a deal. Then they go on about their lives, because EVERYONE is Very Busy.

Everyone agrees that "someone" should look into it; so far I haven't found that someone.

I am near about ready to drive to A2 and camp out at their preemie clinic, but honestly, until someone determines whether or not my kids are anomalies or not, I think I will be patted on the head, and politely brushed off. My "solution" is just plain too easy.
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BR_Parkway Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 05:11 AM
Response to Reply #2
12. Why not where they train Registered Dieticians? I know they have
Master's degrees for that field, seems like someone there would be interested
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 08:15 AM
Response to Reply #12
18. Believe it or not, I have a niece with a Masters in the field --
I've reached out to her before; maybe I should try again? She told me once that there were "two schools" within her field: one more "scientifically oriented" and the other more "nuts and berries" (not her words - my interpretation of what she said). She's seen the babies, and she knows they "aren't normal preemies" especially because she has seen "normal" preemies. But I think its the same with the "huh, somebody should really look into that."
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cali Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 03:55 AM
Response to Original message
3. Are you sure that no studies on premature infants and trace minerals
haven't been conducted? And I'll just leave the "Messenger from God" stuff alone.
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:12 AM
Response to Reply #3
7. Studies show that premature infants have special nutritional needs.
As far as we've been able to determine, there are no studies on trace mineral supplementation in humans. The company that manufacturers the product I used said it was the first time they were aware of that someone had given it to premature infants, let alone at such a young age. The veterinary world apparently has known about this stuff for (literally) decades -- hence, all of the "chows" which have what each species needs. (Did you know that most plants only require about 9 things for healthy growth, while human beings require about 90? Fascinating stuff!) But the guy I spoke to yesterday implied it was one of those "secrets" that is obvious to anyone who has experienced it.

Anyway, the first thing most of the folks I contact (and one research guy who is a friend of mine also did it), is search out the topic.

Zip, zilch, nada. Although there was one Canadian study about vitamins, which really brought home to me how challenging this is going to be: they asked over a hundred and fifty families to participate, and got less than 40.

In fact, my posting on DU back in 2007 is one of the few things that comes up! (How is THAT for the power of the internet?!)
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HillbillyBob Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:03 AM
Response to Original message
5. Try some of the better known Childrens specialty hospitals?
Johns Hopkins, St Judes, that specialize in premmies and other childrens ailments.
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saltpoint Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:06 AM
Response to Original message
6. I'm sorry for the difficulties you and your family have encountered, IdaBriggs,
I really am, but I'm not convinced that nutrition, in and of itself, is the remedy that restores, heals, rejuvenates. Certainly it isn't likely to do that much harm, but people who take a rigorous regimen of multi-everything still get sick. Some of them die of terminal illness despite life-long devotion to a disciplined diet.

My hunch is that most physicians consider it a key element but not the only element and in many cases not the determining element in individual health profiles.

Your "messenger of God" theme definitely did not work for me.

If you feel nutrition concerns deserve a more influential place in primary care and in hospital course treatment, you can begin a local network, then link to others in other towns, and build yourself a 50-state presence. That might be the best and most fun way to bring pressure to bear on doctors and hospitals to reconsider their plans of treatment in given cases.
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:24 AM
Response to Reply #6
8. I agree that nutrition isn't the "be all/end all" of medicine; I think its a serious part.
And there is a time and a place for it, as any heart patient or diabetic will tell you.

I have stated repeatedly that I don't believe trace mineral supplementation is going to cure birth defects, repair brain damage, or fight infection. I think it will help premature infants achieve "normal" growth faster, and should therefore be investigated by reputable people using the scientific method and not just random stories on the internet (which folks can easily dismiss me as, if they so choose).

Sorry the "Messenger of God" theme didn't work for you. Its half a joke, and half not. My belief that all of us can act as "Messengers of God" isn't one that everyone agrees with, and talking about faith in such a way does open me up to ridicule; honestly, its not easy to discuss sometimes.

I am not a medical professional, nor do I profess to play one on television, and frankly, I don't want to have to go on a crusade to get folks to eat their vegetables (since I think that's kind of pretty obvious already).

I just want someone "reputable" to investigate, write a freaking paper, win the noble prize, and OH! Casually help save/improve the lives of tens of thousands of premature infants a year, please.

Is that asking too much? :)
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saltpoint Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:25 AM
Response to Reply #8
9. No, I don't think it's asking too much, but absent some kind of
significant networking, I'm not sure it's going to happen.


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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 04:39 AM
Response to Reply #9
11. Which is why I'm posting my families medical history on DU.
I've reached out to the preemie folks -- Smacked Down. I've talked to total strangers in grocery stores -- they are interested, but frankly, its hard to get preemie parents to "experiment" on their children, despite how obviously great mine are doing, and folks are resistant to it because a) its easy, b) cheap, and c) not coming from someone wearing a white coat. ($20 for a 3 months supply is what we paid; turns out there are other brands out there even less expensive.) My pediatrician and preemie clinic have both SEEN the numbers, as well as the children, and we are officially diagnosed as "Lucky." The nutritionist who originally told us about this warned me a year and a half ago that nobody was going to be interested -- but I didn't believe him; I was *in* the NICU -- why wouldn't any parent try this???

Oh. Because the concept that vitamins and minerals matter, versus "empty" calories, doesn't make sense to most of the population. ("Would you like fries with that?")

I have been actively reaching out to the professional medical community; I will continue to do so. As I said, everyone agrees that "someone" should investigate -- then they either give me a name, or promise to think about it.

Which brings me to my four o'clock in the morning "messenger from God" ramble. :)
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MichellesBFF Donating Member (313 posts) Send PM | Profile | Ignore Tue Aug-04-09 07:18 AM
Response to Reply #8
16. Education of Doctors
From what I understand, nutrition is just an afterthought in a doctors education. The other problem is that the pharmaceutical companies don't want vitamins and minerals to be studied, as they don't make much money off of those type of treatments. (They'd rather have your twins on expensive medications, not a cheap supplement!)

If we ever get universal health care, maybe alternative therapies will be given more credence. I read somewhere that if a heart attack patient in Italy is not given a fish oil prescription, it's tantamount to malpractice.

Anyway, keep fighting the good fight, and don't let those twins run circles around you....
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zbdent Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 05:45 AM
Response to Original message
13. on your mother and the "messenger of God", it reminds me of the story ...
A man is warned that there is going to be a terrible flood.

As the rain came down, a police car came by, and the police man offered to take the man to safety.

The man says "I'm not worried. God will save me."

The policeman leaves ...

A while later, the water is coming into his home, the streets are flooded.

A man in a boat floats by. The man in the boat begs the man in the house to come with him to safety.

The man says "I'm not worried. God will save me."

The boat leaves ...

The rain continues, and the flood forces the man to climb to his roof.

During a point where the rains let up some, a helicopter hovers over the house. A rescue worker begs the man to get into the helicopter for safety.

The man says "I'm not worried. God will save me."

The winds and the rain pick up again, and the helicopter is forced to leave.

The flood overtakes the house, and the man drowns.

The man gets to Heaven, and he is pissed. He asks God, "Why didn't you save me?"

God says "I sent you a car, a boat, and a helicopter! What more could you ask for?"

-----------------------------------------------------------------

Glad your mother didn't go the "birther" route ...
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Fumesucker Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 05:53 AM
Response to Original message
14. You are complaining about something that you do yourself..
"and also told her that a lot of people ended up with hip-replacements when their (blah blah doctor stuff -- yeah, my eyes glazed over; I turn the engine and my car works;"

If you can't be bothered to pay attention to someone else who is explaining how they do what they do then where do you get the chutzpah to complain when no one will pay attention to you?

People are happy in their ignorance, the great majority of people don't want to know how things work, learning is HARD.

Those of us who are fascinated by the details of things mostly don't understand this attitude but we see it around us constantly.



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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 08:12 AM
Response to Reply #14
17. OUCH! You are right! Learning *is* hard --
And I do have a tendency to only pay attention to stuff that interests me. And frequently it feels like there is "information overload" which makes sifting through it a challenge. (Is there finite space in my brain, where new knowledge will make the old fall out of my ears? LOL!)

Sounds like something I should work on; thank you for pointing that out! :) :hi:
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foo_bar Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 07:13 AM
Response to Original message
15. I think western medicine basically concurs (minus the Gabriel stuff)
Since the 1940s, it had been known that human milk was deficient in protein, calcium, phosphorus, sodium, iron, vitamins and trace minerals and would not satisfy the intrauterine requirements of the growing premature infant. <...> Despite this, in 1977, in its first statement on the nutritional needs of LBW infants, the American Academy of Pediatrics (AAP) concluded that "the optimal diet for the LBW infant may be defined as one that supports a rate of growth approximating that of the third trimester of intrauterine life, without imposing stress on the developing metabolic or excretory systems" (AAP 1977 Citation ).

http://jn.nutrition.org/cgi/content/full/131/2/426S

Although trace elements make up a small fraction of the total mineral content of the human body, they play an important role in numerous metabolic pathways. The infant born prematurely is at increased risk for developing trace mineral deficiencies. Premature birth is associated with low stores at birth, because accretion of trace minerals takes place during the last trimester of pregnancy.

http://books.google.com/books?id=bw7esE2kfwUC&pg=PA631&... ("Textbook of pediatric gastroenterology and nutrition")
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-04-09 08:21 AM
Response to Reply #15
19. HOLY CRAP!!! You found something that I haven't seen before!!!
That second one has the exact quote for what I am trying to communicate!!!

I think this is really going to help with my communication with the medical community -- THANK YOU!!!!

:loveya:
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