December 20, 2013

More Thoughts on Woo - and How Doctors Don't Take Women Seriously

Okay, earlier this week I had my little hissy fit about the whole "no need to investigate and stop wasting money on vitamins" editorial (based on bad studies), and shared my own experience with *trying* to get something investigated. Many of you were extremely supportive - THANK YOU.

I have had a lot of time to think about why these issues (nutrient deficiencies) aren't being more thoroughly investigated and why everything has to be either a "disease" or a "genetic disorder" (which completely ignores the role nutrients plays in turning certain genes on/off - but, whatever), and also why medicine is truthfully still as much of an Art as a Science, and here is what I have come up with - your mileage may vary, and I would like to stress this is my opinion, and limited to my own knowledge and experience.

Back in the 1800s almost half of our population was involved in agriculture; by the year 2000 that number was at 3%. And only "rich people" could afford medical training back in the day, and realistically, how many rich men were involved in taking care of the livestock on the family farm? The farm, after all, was pretty far away from the city where the schools were, so think it through.

I've used the "when your only tool is a hammer, everything looks like a nail" analogy before, and I think it applies to nutritional issues, too (on both sides of the discussion). If you know any people involved in training as physicians, ask them (for example) if they have time to garden. After they finish laughing at you, ask them when the last time they fertilized their lawns was (if they even *have* lawns). Master Gardeners (of which I am *NOT* one) are probably already smiling; feeding your lawn a decent blend of N-P-K (nitrogen-phosphorus-potassium) affects how quickly it grows, the color, the strength of the root system, and its ability to combat drought/disease (among other things). These micronutrients are essential to healthy plant systems, and there is a ton of information out there about how to calculate the "best" percentages depending on your goal.

The same concept goes for animal husbandry. How many physicians do you know who have time to pay attention to the health of livestock while undergoing medical residency or actually practicing medicine? Nowadays we have a lot of companies providing "ready mixes", but a hundred years ago farmers were still mixing their own; screw it up, and you lost money. But again, this is not something most modern day medical students really have to deal with (although I am sure there are a few out there).

I probably don't need to discuss the challenges of getting women into the medical field, do I? Shockingly, many historical "female problems" were simply not taken seriously by male physicians ( ) and some pretty common medications involved opium and alcohol. Apparently we just imagined problems a lot, and at least that shut us up. See the wrong gynecologist, and you may still get this attitude - I did back in the 80s.

So we have a profession that does a lot of good, but is not really in touch with "how to grow a healthy pig" (for example) with a long history of dismissing concerns that haven't been personally experienced by the practitioners themselves, all puffed up and proud because they are "scientists", and anyone who doesn't follow the same path to reach the same conclusions is easily dismissed as a practitioner of "woo"; to be fair, this is an age old battle - midwife versus medieval physician, still replayed to this day.

And here is where I fight my little anti-fury battles, because I *get* the mindset that comes with the discipline they practice. I do not have the training to hold myself a little separate from the children in my project - their success and failure hits me at a level I cannot explain. It is not my normal. It feels like an unpleasant place to be, and I have not accepted it as "my home" for the duration of my career. To be honest, I would like the "Preemie Growth Project" to just go away in a few years because the mission should be accomplished with this getting investigated and implemented where appropriate. (Seriously - work for free, and see how quickly YOU want to work yourself out of a job! Lol!)

But then I get angry again, because WOMEN (and what we report) STILL AREN'T TAKEN SERIOUSLY. Let me give you an example --

One of the most common laments of the preemie mother is "my baby won't eat or gain weight." This is one of the scariest things a parent deals with -- when your child is "failure to thrive", and you *know* something isn't right because they aren't eating, you get anxious. You ask the doctor for help. You talk to everyone. You freak out. And when you are watching your child "not eat or grow or meet milestones", You *KNOW* Something Isn't Right.

The doctors initially double check to make sure you aren't a moron, or someone who is abusing / neglecting your child, then they assure you it is normal. The moms know better. Some of them do stupid stuff - one mom I know started feeding her child lard with sugar in it to help her child gain weight - and some just force feed their kid. Most spend time crying. If your child doesn't eat, as mammals we know our babies will die, and every bite becomes a battle, every calorie a victory - if the only thing your son will eat is chicken nuggets (for the sensory moms), then by God! your child can have as many nuggets as he wants!

The Mayo Clinic says:

Zinc deficiency - Zinc deficiency is caused by inadequate intake or absorption, increased zinc excretion, or increased bodily need for zinc. Zinc deficiency symptoms include growth retardation, hair loss, diarrhea, delayed sexual maturation, impotence, eye and skin conditions, and loss of appetite. Additional symptoms may include weight loss, delayed wound healing, taste changes, and mental lethargy. Zinc can be measured in plasma, red blood cells, white blood cells, and hair. http://www.mayoclinic.com/health/zinc/NS_patient-zinc/DSECTION=evidence

I am using Zinc because it is easy. Physicians already know premature babies are at increased risk for trace mineral deficiencies because it is in their textbooks and the neonatologists prescribe intravenous TPN to correct for it. NOTE: If you are missing one of the trace minerals, odds are good you are missing more that we don't know how to measure - this is for example purposes only, so don't diagnose yourself based on this post, okay? INVESTIGATE IF YOU ARE CONCERNED!

Back in 2007 when I started supplementing my babies with the trace minerals, the first thing I noticed was they started eating like little pigs and gaining *healthy* muscular weight like crazy. Prior to this, coaxing them to drink 30 mls of formula was an absolute battle, and it could take more than half an hour to get that small amount into them every three hours as instructed; when they started eating like "normal" babies, they sucked those bottles DOWN quickly and demanded more. They ate, they grew, they got healthy.

While I was doing my research for the Project, I ran across this little gem --

Col-late Piglet Kick-Start - "An immediate available source of glucose, B vitamins, vitamins A, D and E, amino acids and trace minerals (emphasis mine) providing a nutritional boost for runts and poor doers. PIGLET KICK-START ensures that the weak piglet receives rapid assimilation of energy and nutrients as the essential ingredients are shunted directly into the bloodstream across the stomach wall. Marked improvement will be evident in minutes." http://www.hyperdrug.co.uk/Col-late-Piglet-Kick-Start-100ml-50-doses/productinfo/COL9008269/

So let me get this straight: when the mother of a fragile newborn tells a doctor "my baby won't eat!" she's imagining things, but when a RUNT PIGLET won't eat, farmers have a nutritional product ON THEIR SHELVES that "provides a nutritional boost for runts and poor doers" that has been used FOR DECADES?



Bonus - it has zinc in it.

The health of my children was a woman's problem; my husband worked while I stayed home for the first year of their life, and my observations of my own children's growth are dismissed (including here on DU, by the way), despite heavy non-biased documentation by both their pediatrician and a NICU follow-up clinic, as purely "anecdotal". Not one of the organizations you would think would be interested (March of Dimes? ROFLMA!) has sat down with me to interview me to determine why the results my children achieved happened, or to verify whether what we did could be repeated. Anything I have to say is...not relevant. I am a reasonably intelligent college educated woman, but I am *not* a doctor.

But runt piglets -- ah, runt piglets who have no energy / won't eat, THAT can't be "bad mothering" so the veterinarians and the farmers actually INVESTIGATED the NUTRITIONAL NEEDS behind WHAT GIVES BABY PIGS THE ENERGY TO EAT AND NOT DIE, provided it, discovered it worked, and have been using it for DECADES???

Didn't someone figure out people are mammals, too, like a hundred years or so ago?



We were lucky. I heard that line so many times I started spitting it out. LUCKY. Yep, LUCKY. Or "blessed". That was another line - "you should be counting your blessings!" (I do - trust me, I do!) Both minimize my experience. Both DENY my reality. Both DISMISS what I report - and that was even before the good portion of my journey began.

Healthy babies eat and grow. Failure to thrive babies have poor appetite, don't grow and are at increased risk for further health problems. And LUCK doesn't need to be investigated.

Food and babies are women's purview; it isn't "science" like runt pigs are science. Women things aren't taken as seriously, and the reports of those who care for children are obviously biased. Bottles and poopy diapers (input and output!) are not seen as "measurable data" -- if the baby won't eat, it is obviously the mom's fault (or so we tell ourselves). It is one of the many reasons I think "correctable nutritional deficiency" was totally missed BY MALE PHYSICIANS as a cause of neuromuscular problems for 50+ years, just like autism used to be blamed on mothers, or having sex on a holy day was obviously why children were born with problems we now know are related to Vitamin B9 (folic acid) deficiency or why tens of thousand of women died because physicians who didn't believe in germs wouldn't wash their hands, or an african american lab technician who invented heart surgery worked for a white guy who took all the credit.

Do I sound bitter? How about "aware" of my current reality? The rise of the expert makes it easy to ignore me when I beg for an investigation.

But....

If you don't know what it takes to make your grass green, and you don't know what your cows eat to make milk taste sweet, and you don't know how or why the contents of the quality "animal chow" has increased the life expectancy of your own dog, how can I honestly expect you to know what the FUCK you are talking about when it comes to nutritional issues with a premature baby?

Oh. You're a doctor. Got it.

I'm a mom.

And I'm LUCKY.

End Rant. Thank you for reading.

December 17, 2013

Nitwits & Why Physicians Lose Credibility

We have a lot of folks on DU who are "experts" on a lot of stuff, but one of the favorite topics is "woo." "Woo" is generally anything that has not gone through rigorous scientific testing and stringent peer reviewed studies.

Today the good folks at the "Annals of Internal Medicine" jumped in to the fray, and have published an editorial that has me personally pissed off six ways to Sunday because they just don't know what they are talking about when it comes to nutrition.

Yeah, I said it, and I stand by it.

Enough Is Enough: Stop Wasting Money on Vitamin and Mineral Supplements

...Despite sobering evidence of no benefit or possible harm...

(snip)

The large body of accumulated evidence has important and public health and clinical implications. Evidence is sufficient to advise against routine supplementation, and we should translate null and negative findings into action. The message is simple: Most supplements do not prevent chronic disease or death, their use is not justified, and they should be avoided…The evidence also has implications for research. Anti-oxidants, folic acid, and B vitamins are harmful or ineffective for chronic disease prevention, and further large prevention trials are no longer justified…With respect to multivitamins, the studies published in this issue and previous trials indicate no substantial health benefit.

http://annals.org/article.aspx?articleid=1789253

Well, there you have it - pregnant women everywhere, stop taking your prenatal vitamins and folic acid because all of the research that showed good things was just a joke. Oh, and the Vitamin K shot stuff that has been doing what for babies? Ha! A "well nourished" baby needs no such thing! And all of you crazy veterinarians who have been dealing with "what does it take to grow healthy livestock" - you must be imagining THIRTY PLUS YEARS OF RESULTS because the hallowed authorities have spoken and the fact they don't know what they are talking about is completely beside the point!!!



Did I mention I am PISSED?

Many of you know my story. For those who don't, let me share. My husband and I went through eight years of infertility treatments that included three miscarriages. If the doctors said jump, we asked how high. If they said needles would help (drugs or acupuncture), into my body they went. You name it - pineapple juice, standing on my head, quacking like a duck - I was there. I also saw a guy with a PhD in CLINICAL NUTRITION, and followed his instructions for my prenatal supplements: a good quality easily digestible multivitamin, folic acid, zinc, and liquid trace minerals. And blessed be - I got pregnant with twins.

I am an anal retentive geek; I get "garbage in/garbage out" and I read the "what to eat for a healthy baby" books, especially the one about "how to eat if you are pregnant with multiples." And I tried - except I had hyperemisis the whole pregnancy, which meant "non-stop, put you in the hospital vomiting" and instead of gaining weight, I lost it, which was Very Bad. Then I ended up with pre-eclampsia, we all almost died, and my babies came two months early.

My daughter was born at 3 lbs 15.6 ounces, and my son was born at 4 lbs 3.5 ounces. Those are good weights for that gestational age, especially for twins, and a little surprising for the medical problems I was facing. We did the NICU trauma - 13 days for my son, and 19 for my daughter, who came home on oxygen and a heart monitor - and since I couldn't get them to latch, I pumped every three hours for two months.

And then I couldn't physically do it anymore, and had to switch to formula.

"Studies show breast milk is best for babies" and I knew that. My twins were at increased risk of neuromuscular issues due to their prematurity, and anything I could do to decrease those odds (since we had been living on the bad side of the odds for a very long time at this point) was important to me. But I honest to God could not physically do it because of absolute and utter exhaustion at a level I can barely describe. And I had a small breakdown in the middle of my kitchen, crying and praying because these children were the most important thing in my life, and I was failing them - first I couldn't eat right while I was pregnant, then I couldn't keep them safe inside of me, and now I couldn't "not sleep" so I could feed them. And for reasons unknown, as I was mixing their bottles with the polyvisol and liquid iron (baby vitamins and the iron was for anemia issues), I saw the liquid trace minerals I had been continuing to take while nursing, remembered a lecture about chickens getting 25% bigger than other chickens, and went, "well, it couldn't hurt" AND THEN I ADDED 3ml once a day to their bottles.

Two months later I had "normal" 14 pound four month old babies. By six months old, they were top of the growth charts for full term babies, and then they started meeting or beating their milestones as if they were full term babies.

Those of you who know anything about preemies are probably either surprised or skeptical. I have pictures and doctor reports. Honestly, it was somewhere between eight months and a year before I started getting how unusual this was - I had been told "preemies usually catch up" but didn't know it wasn't supposed to happen until they were one to two years old. And I suspected the trace minerals had helped and shared that information with my doctors; no one was interested.

The twins turned two, and I decided to push for an investigation. I contacted over FIFTY different organizations, physicians, research facilities, the NIH, formula manufacturers - anyone I could think of, I called. I put together a PowerPoint presentation, and over and over again I asked, "please investigate this - I think it is important!" People were happy we had such good results, especially because so many preemies don't, and everyone agreed "someone should investigate that."

We were formally diagnosed as "lucky."

In 2009 I complained about it here on DU, and the explanation was found in the "Textbook of Pediatric Gastroenterology and Nutrition" on page 631 - “[preemies] are at increased risk for developing trace mineral deficiencies... because accretion of trace minerals takes place during the last trimester of pregnancy." In addition to explaining what happened with my children, it also explained why preemies get "caught up" between one and two years of age, because that is when they start eating "real food" which has the missing micronutrients in it.

I went back to every single scientist, physician, organization, etc. showed them the textbook, AND NOTHING HAPPENED. Apparently I had given birth to miraculous mutants.

It got worse. We started the "Preemie Growth Project", provided the trace minerals to 17 more preemie babies (crappy documentation because honestly expected other people to take over), and they ALSO "caught up" in 2-4 months.

Yawn.

Ah, then Jordan's baby happened - 9 months old, weighing 12 pounds, diagnosed as a "floppy baby", she was told he would receive his formal cerebral palsy diagnosis when he was two, but she needed to begin preparing herself for him to spend the rest of his life in a wheelchair. She gave him 15 mls a day, and two months later he weighed 22 pounds, took his first steps, and currently has no cerebral palsy symptoms - woo hoo! THAT is a big deal, right?

My fifty folks didn't even blink. "Misdiagnosed."

The twins were 5 when "the Neighbor Girl" incident occurred. She was 9 years old, born a micro preemie, confined to a wheelchair, unable to use her hands to take care of herself, "failure to thrive" at 44 pounds, and unable to remember the alphabet. Her brother was five - my twins were five, and the family didn't do wine, so I gave them a bottle of the trace minerals.

June 8, 2012 - six weeks later - she was standing up, bending her fingers, could remember the alphabet, and weighed 50 pounds. I freaked out.

This time I documented. We put it on the web. We gave it away for free, and ended up with 271 children in 38 states and six countries. We ended up with "good data" on 162. 121 saw "dramatic measurable improvement" in at least three of the eight categories we tracked. They started eating. They became demonstrably stronger. Three reported CVI children responding to visual stimulation. Small skulls began to get bigger. Babies responded in as little as 72 hours. 74% of the chronic "failure to thrive" kids were no longer in that category within 90 days. Teeth grinding stopped. Chronic constipation went away. Sensory issues were "gone" by week 16. "Impossible" things kept happening - clonus went away for one child! - and every excited parent assured me their doctor was going to be very excited because this was a MIRACLE!

Not one phone call. Not ONE.

These are busy people. Nutritional supplements are a waste of time and money. Just because the vets use them doesn't mean humans need them, right?

ARGH!!!

I don't sell this stuff. There are multiple brands on the market, and while I have my favorite, they all seem to work.

Apparently, you NEED the trace minerals TO GROW BRAINS. Also muscles, and a few other things, too. Children with deficiencies have neuromuscular issues. Correct the deficiencies, and the kids get better.

Oh, and it has to be done ORALLY (which is why TPN in the NICU isn't doing it), and liquid on an empty stomach seems to get the best results.

For babies, you just add it to their bottles. For children, mix it with juice. It tastes nasty. We've documented the pattern of improvement pretty clearly, and people know within two months if they are going to get a magical "lucky" diagnosis.

There is more - so much more! - and I have a list of unanswered questions, including why it only seems to help four out of five kids.

Apparently, I am "peddling woo." According to the experts, all of this is imaginary, and could be attributed to the placebo effect. Babies *always* respond to the placebo effect - and children, too!



At the end if the day, I have to make my best decisions for the benefit of myself and my family. I need to decide if the good folks at the "Annals of Internal Medicine" know what they are talking about. I have to decide if they understand the importance of a DIGESTIBLE multi-vitamin, or the differences in efficacy that can be found with a liquid form when there are issues with lower intestinal absorption. I have to figure out if they get that deficiencies can cascade, because zinc deficiencies can impact the appetite, which means you don't eat, which means you don't get what you need, which makes things even worse. Do they understand the role of biotin in Vitamin
B absorption? How about the estrogen/copper connection for young boys? Or the disastrous role of miralax and how it affects people with chronic neuromuscular issues?

I am guessing not. I find them to be "not credible."

And maybe I did indeed "get lucky" when the "scientific community" opted to ignore my story.

It isn't like they really seem to know their heads from a hole in the ground anyway.

Yep. I believe in "woo".