I want to thank Jilly B for sharing with us at least some of the difficulties she has faced since her two-year-old daughter became seriously ill from raw milk.
We don’t know the whole story, but we know enough to appreciate that her daughter and entire family have endured a tremendous amount of suffering.
I’ve struggled with what exactly to say, since she Jilyl sums up the nut of the problem as well as anyone I’ve seen here, myself included:
“The ‘dirty farmer’ is as bad as ‘something was wrong with your daughter’s immunity.’ Instead (of) standing by people, you have turned on them. This is why the movement has become ‘us versus them.’ It does neither side any good. Instead it leaves parents like myself who are researching raw milk wondering who to believe. When (in) reality there is a truth in between.”
If I might be so bold as to re-state her message, it is this: Grow up, the bunch of you. Those of you who advocate raw milk, stop pretending that people like me, devoted mothers of kids who got sick from raw milk, don’t exist, or that we somehow screwed up in raising our kids and/or assessing our farmer. And those of you who oppose raw milk, stop trying to use me as a propaganda tool, to trumpet your message that raw milk is evil and that you only care about protecting little kids. You’re all a bunch of hypocrites.
When I put it like that, I realize it truly is a sad state of affairs at its core. But as long as I’m stepping back, I do want to say that I personally have been impressed by how much more well reasoned, even compassionate, the tenor of the comments has been compared (with notable exceptions) to what they were when another mom, Mary McGonigle Martin, first recounted her son’s illness from raw milk more than five years ago, in March 2007.
Over the next several years, she provided much additional information about her and her son’s experiences, and often engaged in terribly heated arguments with many people on this blog, including Mark McAfee of Organic Pastures Dairy Co., and others who felt she went overboard, seeming unable to let go of her experience. Yet, here she is complimenting McAfee about the Raw Milk Institute (RAWMI), and even expressing approval for raw milk sales (with the proviso that people should know they can pasteurize it when they get home, which is absolutely their privilege.)
Despite the improved tone, a good number of individuals here seem committed to holding fast to their views. Telling moms the solution is to expose their children to dirt isn’t the most useful answer. Yes, it might be true, but it doesn’t address the immediate problem facing Jilly. If children get sick from raw milk, reminding families to trust in dirt and bacteria doesn’t do anything to help them. Telling them it’s all a conspiracy against raw milk isn’t the way, either. Worst of all is ostracizing them because they remind others of the dangers of raw milk. They need compassion, and maybe even assistance in recovering their health and family normalcy.
None of this, however, addresses the underlying problem, which is that Jilly feels she can’t trust either side in this raw milk conundrum.
I’m not sure she wants to hear in depth about that any more than she wants to hear about the role of bacteria in our lives, but I think it’s worth trying to explain, given the discussion that has unfolded.
Most fundamentally, the issue of raw milk has become so politicized that it’s nearly impossible for someone like Jilly, in search of straightforward information, to obtain it, either from government regulators or from farmers. The government public health officials in the form of the U.S. Centers for Disease Control and the U.S. Food and Drug Administration say that raw milk not only doesn’t confer any health benefits, but it is deadly dangerous and shouldn’t be served to children in any event.
But all someone investigating the issue has to do–especially if they have friends or acquaintances consuming raw milk–is look around just a little to realize that what the government is saying isn’t so, that thousands, and likely millions of people, are consuming raw milk each day without ill effects. Moreover, many of them are improving their health–a reality being backed up by serious research out of Europe (contrary to what amym argues).
If what the government public health people are saying isn’t true about the dangers of raw milk, then a logical conclusion individuals like Jilly come to is that everything they say must be exaggerated at best, or a lie at worst. Good-bye credibility.
On the other side are those raw milk advocates who suggest that serious illnesses are so rare as to be inconsequential–indeed, that raw milk’s good bacteria guard against illness by killing the bad bacteria. As a result, they don’t see the need to provide serious explanations and warnings about the potential dangers of raw milk…and why give government opponents more fodder for their crackdowns in any event? Individuals like Jilly read the hype about raw milk being inherently safe, and they tend to believe it in the information vacuum that exists.
So when someone like Jilly enters the community with her tragic story, it creates all kinds of anxiety. The underlying concern in the community: what if there are enough serious illnesses so as to be consequential? Are my children at risk as well?
If both sides seem to be off their rockers, not to be trusted, what do you do? I’ve asked myself that question a good deal, and have decided, for myself personally, that I trust the pro-raw-milk side more than the anti-raw-milk side. For a very simple reason: While there are some in the pro community who are in denial about illnesses, there are others who aren’t. In fact, there are a variety of views about illnesses, some of which we see in all the comments following my previous post.
This community tolerates a variety of views. Maybe not always graciously, as both Mary McGonigle Martin and Mark McAfee know very well.
I know there are some in the raw milk community who are offended by the view I’ve expressed in any number of public forums–that raw milk is riskier than pasteurized milk in terms of illness from pathogens…even though it’s likely not riskier than some foods that are regularly consumed without controversy.
But the anti-raw-milk community doesn’t tolerate anything approaching a diversity of views, at least in the public arena. Its approach to free speech isn’t dissimilar to that of Cuba or North Korea. If the squashing of an academic article about the potential health benefits of raw milk at the University of California, Davis, has taught us anything, it is that there is absolutely no room for open discussion or debate about the pros and cons of raw milk within that community.
And that is the key point: there is much to learn and discuss. When Charlotte Smith calls her local agriculture extension and Oregon State University to learn more about how to produce raw milk safely, and can’t obtain any information, that is wrong. Unfortunately, it is typical, in fact, nearly universal in this country. It borders on criminal to deny well established guidance and information to farmers who want to do the right thing…all because our public servants have decided it’s is better to let kids get seriously ill so as to help make their political case that raw milk should be banned.
I won’t even begin to get at the corruption that leads professional scientists and health care providers to take such a cynical approach as to increase the risk for young children becoming sick, since that is a whole separate subject. But when you fully appreciate the official hostility to raw milk (and to food choice in a broader sense), you begin to understand why farmers seek to avoid regulation, and operate underground. They know that, too often, the regulators aren’t there to improve safety, but rather to put the farmers out of business.
There are actually people in the public health and agriculture regulation communities who see the dairy that made Jilly’s daughter sick as run by criminals. I won’t excuse the operators. But I will say it is difficult for any dairy’s operators to get the education they need if the people in charge are essentially pointing a gun at their heads.
I know this isn’t the kind of answer Jilly would like. She and others in her position of trying to learn about raw milk deserve straightforward, helpful, complete, and honest information. Gradually, it’s becoming more available from farmers like Charlotte Smith in Oregon.
Unfortunately, it will be a slower process than it should be because the situation is currently so politicized that the participants–especially the regulators–seem incapable of having any kind of rational discourse. But I’m an optimist. I feel the will of the people will prevail, and I have no doubt the will of most Americans is that they should decide which foods to put into their bodies, and they should make that decision with the best possible information at their disposal.
I had forgotten a lot of what was said in 2007. From your link: “Mary wonders not only about the raw milk, but about the antibiotics doctors used to treat Chris, which may well have exacerbated his illness. ”
There was much questioning of the care her son received from the medical community. Antibiotics, anti-diarrheals, narcotics, all of which would exacerbate the illness.
” While she feels she cant in good conscience serve her son raw milk again, she backs the right of others to make that decision for themselves. And she doesnt try to create a climate of fear. We live in a toxic world, she says.”
“Shes still speaking with the medical people involved in treating Chris, trying to get them to examine their treatment methods so they wont repeat possible mistakes again. Were not suing, but we want to get them to understand what may have gone wrong.
Perhaps if she had sued them, they would have made an effort to change their non-protocals…. As of now, nothings changed.
“As for the raw milk debate, she says, We have two extremes. The raw milk people say you cant get sick. The public health officials say thats why we have pasteurization. I think there is a middle road.
What of us who aren’t at either end of that spectrum? Or is it you are either one or the other?
When RAWMI presented its day long course to 50 interested micro dairy raw milk farmers in St. Paul Oregon this summer, a great deal of time and energy was spent describing pathogens and how kids can and do get sick from raw milk. This was a central theme and not hidden. We critically described the two kinds of raw milk…one for people and one for pasteurization. We also went far beyond those subjects and described all the risks from Glass to Glass that should be addressed to limit illness and optimize the healing benefits of raw milk….and there are many.
So please list me in the category of….it is possible to become sick from raw milk. Do not list me in the category of raw milk advocates that claim raw milk can not make a person sick. It can. Just like all other foods. Including pasteurized milk that has killed 8 kids ( allergic to perfectly pasteurized milk ) since 1998.
Everyone needs to know that RAWMI has been made aware that several small micro dairy producers in a nearby state have contacted RAWMI saying that they fear that their raw milk is currently making people sick and want to know what to do. So…RAWMI is being called after raw milk is making people sick??? Jilly take note.
Raw milksafety is kind of like a horse and the barn or a bullet in a gun. Once is it out, it is hard to or impossible to get it back. Raw milk must be produced in a set of conditions that prevents challenges…. before it is out and being consumed.
I am determined to ignore the back ground noise of those on either side of the raw milk gauntlet and simply do the right thing inspite of all the noise. It is a consensus, among state of CA agencies, dairy specialists, experts etc… and other participants, that a food safety plan and compliance testing is the way to go. IE…RAMP and RAWMI LISTING as examples. What gets measured gets done.
Raw milk is growing and it must grow responsibly. I invite everyone to hear Charlotte speak at the WAP conference next week. RAWMI did not ruin her freedom….it gave her ther ability to sleep at night knowing that her raw milk is very low risk and even got her insurance at a 13 fold cheaper rate.
True north is not in dispute in my mind….or heart.
No more blaming the child, the farmer, or the hospital for the illnesses. The blame belongs with the raw milk leaders in this movement who have set up innocent people to believe that raw milk is inherently safe and as long as you love the cow and feed it grass all will be well.
It finally dawned on me : the source of for your animosity is a steady paycheque from Marler & Co … ironically, the case by which Mr Marler made his name ( not to mention, fortuen ) – wherein about 2 dozen people died from eating food improperly handled – is in business this very hour. Yet I don’t see you out there picketing Jack in the Box. As Ann Landers used to say ” Lady, you need professional help”
I see cows in probably over a foot of mud and not on pasture . . .there is pasture in the distance so why were the waterers not placed outside of the mud zone and rotated?. . . why am I not surprised by this. Cows need to be kept clean if you are to sell raw milk. . . .and they need to be healthy. To ask a cow to wade through muck like this is asking for disease. I just threw down 4 bales of straw to keep the mud down around my back door of the barn. I need to keep my sheep’s feet and underbelly healthy. It has been a very wet fall here. Next year all of that will be scooped up and taken to my compost heap to break down for two years . . . then it will be put into my vegetable gardens. New gravel will be put down. Cows and all ruminants need to be kept clean and dry if at all possible. When I saw this photo . . . I immediately knew what went wrong.
Where did the farmer get the idea to set up a heardshare program? The FTCLDF writes the herdshare contracts. Did they write this one? I dont know if there are others that also assist in writing up herdshare agreements. Does anyone else know? This seems to have WAPF written all over it. They encourage farmers to get into the business via herdshares. The goal is access to raw milk without government regulation.
It seems to me that whoever is helping with writing the legal document for the herdshare contracts should also be the people informing the farmer of the pathogen risks involved with providing raw milk, as well as guiding the on the need for an insurance policy. The liability is huge in the raw milk business.
Apparently, this farmer in Oregon was young and had only been milking 3 out of his four cows for a year. As you can see in the photo’s of his farm . . . he was not very diligent in “animal husbandry”. I have said it before and I will say it again. Husbandry is the key. As an old timer once said to me . . . if you smell manure . . . you have a problem . . . . because if we don’t like the smell then our animals don’t like to stand in it or smell it either.
Farm Insurance for us is a no-brainer, Mary (even our sheep are insured) . . . Best, Violet
As of this past Aug ERs/doctors are still pushing antibiotics with suspected and with STEC..mission not accomplished.
Your post reinforces the need to instruct people whether a consumer or member of a cowshares on what to ask and what to look for. Amanda’s list is a great starting place. I can’t imagine buying any food that’s been wallowing in unclean areas. People don’t know what to look for nor what to ask.
Caveat emptor is as old as the hills…
There are always going to be more Jillys, Marys, and Melissas, etc and to an even greater extent if we fail to respect natural forces and individuality.
Ken
This freedom of choice, will come about with more and more education about the foods people consume; whether raw dairy or any other food.
Most people don’t have a clue about their foods. Look at the uproar about ‘pink slime’. I have a feeling that many now think it is no longer being used-I believe they are sorely mistaken- pink slime is still being utilized by the industry. They are un-aware that meats are ‘glued’ together to form a specific piece of meat, etc. They are un-informed about how store milk is processed.
Change and teaching is a long process. Look at the back-lash Dr Oz got when he exposed the arsenic levels in juices: http://www.doctoroz.com/videos/arsenic-apple-juice Dr Oz was right and the govt tried to make him appear wrong- before they changed their tune. brave for Dr Oz standing his ground.
What made dr Oz on this issue successful, was he had facts to show he was correct and he didn’t back down. (I also find it appalling that American juices are made from products from other countries) Makes one wonder what else the FDA,CDC, etc are hiding from the public.
“squashing of an academic article about the potential health benefits of raw milk at the University of California, Davis, has taught us anything, it is that there is absolutely no room for open discussion or debate about the pros and cons of raw milk”
Hitler, Stalin and others have used this method to suppress/oppress the public. Didn’t hitler begin by feeding the people? They had been in a depression too, and many were hungry. He stymied those who spoke out or opposed him. Keep them ignorant and control their food/water and you can rule everything.
Ken
Ken
When a person does interviews, all the facts are not interpreted correctly. For example, I did not try raw milk to cure ADD and Chris ADD symptoms did not improve with drinking raw milk. David got his information mixed up. What improved was his congestion. He was constantly congested and that is what motivated me to try raw milk. I actually did not go looking for raw milk. It found me.
If you are interested in the entire story told by me, not someone else, you can read it here http://www.foodsafetynews.com/2012/04/is-the-foundation-of-good-health-found-in-a-bottle-of-raw-milk/
Mary, you aren’t asking enough questions. Why do farmers in Oregon (and other states) feel compelled to establish herdshare programs? Is it because they are really communists, and want to test out communal ownership? No, it is because raw milk has been banned or access severely restricted in their states. So they resort to herdshares (and other private arrangements) out of desperation, usually in the face of official hostility. Now, maybe FTCLDF and others setting up these arrangements could do more to bring the pathogen risk front and center, but they have taken steps on this front–the related Farm-to-Consumer Foundation has developed a number of programs and media that stress food safety and reducing pathogens. Take a look.
http://f2cfnd.org/resources/
This is many times more than your revered public health establishment has done.
No, the public health and agriculture establishments have implemented a policy of “let ’em rot in their own stew.” Translated…if they insist on having their raw milk, then we’re not going to do anything to educate farmers or consumers about the dangers, and we’ll blame them for their ignorance when problems occur.
Just for the record, I did post Mary’s story in her own words in a two-part series on this blog back in early April 2007:
http://www.thecompletepatient.com/article/2007/april/2/memoir-raw-milk-illness-turned-medical-nightmare-part-1
http://www.thecompletepatient.com/article/2007/april/3/memoir-raw-milk-illness-turned-medical-nightmare-part-2
For example, David’s slant was that doctors were not interested in discussing the possibility that antibiotics (used on day 4 after a sigmoidoscopy revealed he had colitis) exacerbated Chris’ illness. This is not accurate. We had hours of discussions on this topic when Chris was in the PICU at Loma Linda. Studies were printed for us to read. In the end, medicine is a crap shoot. What works for one can kill another. You know this. You are a nurse.
Everyone always barks up the wrong tree when analyzing Chris case. We got stuck in a catch 22 within our HMO organization. We had to be sent to their PICU in LA first (not that I would even consider it a PICU). Unfortunately, their PICU did not have the capacity to do kidney dialysis. Childrens Hospital of LA (they contracted with this hospital) across the street was full by the time Chris was in complete renal failure. These are realities living in California. Even if you dont have insurance, children cannot be turned away. We had insurance, but couldnt get the care we needed because the hospital was full with indigent children. These are moral/ethical issues that can be debated, but never resolved. In Gods eyes, is my child more important than a child who does not have medical insurance? Should a child at CHLA have been kicked out of the PICU to make a spot for Chris? So to make a very long and painful story short, my husband got us to the Loma Linda PICU (even though they didnt contract with this hospital). He was the hero of the day September 14, 2006. We got Chris there in time to give him emergency kidney dialysis.
So Sylvia, you can take jabs at me and make light of the changes we made possible for future kids who developed HUS within our HMO, but I am proud of what we accomplished. We spent hours communicating with people in power who could make change possible. The end resulttreating physicians can now send a child diagnosed with HUS straight to a childrens hospital even if they dont contract with that hospital. There is no longer a pit stop at the HMO PICU. They are going to error in the direction of the child needing dialysis. If a child is sent to a childrens hospital PICU and ends up not needing dialysis, then the child can be sent to the HMO PICU for the remainder of treatment. When Chris was ill, it was the other way around.
Mary, as RAWMI develops, more and more information including the power points that are used to mentor farmers will be posted. This data includes pathogen discussions.
It is my hope that RAWMI and FTC Foundation will work very closely in the future and join forces. In this current world non profits are tough to fund. I congratulate Tim on his work at FTCFoundation. Good job !
Unfortunately, when a farmer becomes well trained his work is not known or recognized. Consumers can not identify that low risk high quality raw milk. That is what RAWMI does very effectively.
All is for not…if the consumer can not clearly identify producers that are low risk….LISTING provides this differentiation. In the old days, the AAMMC did this job. The AAMMC doctors org set and audited raw milk standards, it is now defunct. I tried to resuscitate it with meetings with Dr. Paul Fleiss in LA to no avail. It had become a social org of old alta dena friends. It was not really engaged in current raw milk markets or concerns.
Training farmers is critical….even more critical is the follow up audits and application of standards, and testing to assure compliance. Then transparent display of data on the Internet.
As for barking up the wrong tree; your words on this blog, in the past, led to the conclusion that your son did not receive optimal care from the facilities. Giving anyone antibiotics along with antidiarrheals and narcotics with e-coli or even suspected e-coli is a disaster waiting to happen. It doesn’t matter if it’s day 1 or day 5, they screwed up.
As for kaiser, they will always be substandard, worse than HCA facilities, and that’s pretty low. You know for a fact that they transfer these kids each time, with no additional costs to patient? You know for a fact that they tell “parents” what their options are? There’s always bridges for sale somewhere….
If David is misquoting you, I would recommend he correct himself. As a journalist, tsk tsk… I’d expect better. (I’d be really surprised if David misquoted anyone).
“9/8 Friday: Chris is admitted into Kaiser Hospital, Riverside, at approximately 5:00 a.m.. Later that morning is the first time we meet Dr. A. He arrives with two resident doctors and we hear a very specific explanation regarding his thoughts about presenting symptoms.
He explains to the residents (and to us) that the presenting symptoms do not allow a determination of bacteria or virus. He states that the blood and urine samples continue to come back negative. He also informs us that the stool cultures will not be available until Monday or Tuesday.
He also stated explicitly to the resident doctors that at no time should Chris be given antibiotics until the cause of the presenting symptoms is identified. He stated that giving antibiotics could make things much worse if this is e-coli.
(Note: I spoke with P.U., Health Plan Representative, on November 20, and she stated that Dr. As concerns about antibiotic administration are written into the record.)
Dr. A also stated that morphine could not be administered for my sons cramping because if it was a virus it could cause him to become constipated.
Chris continued to have diarrhea every 15-30 minutes for the entire day and evening. He began to experience cramps with each trip to the toilet. During this day, the vomiting, cramping and diarrhea was manageable.
9/9 Saturday: All presenting symptoms continued throughout the day. Chris vomited before each bowel movement. He was in severe pain.
In the morning, the attending physician wanted us to attempt a food and water challenge. Chris threw up the applesauce and water shortly after consuming it. Shortly thereafter, Chris began experiencing a severe pain on his right side. Doctors suspected appendix. They ruled out appendicitis after two CT scans, but did note an inflammation in his bowel. (After consultation among several doctors) the first antibiotic (was ordered): Flagyl. TPN was also ordered for nutritional purposes. ”
Looks like the antibiotics started day #2.
“9/10 Sunday: In the early morning hours, nurses urged us to request transport to Fontanas pediatric unit, suggesting that a higher level of medical care was necessary for Chris.
Mary, mother of Chris, specifically addressed the diagnosis by asking Dr. F if colitis was the primary cause of our sons symptoms or if it was a secondary cause. Dr. F stated that it was the primary cause and that he must have had a virus that triggered something genetic.
Mary informed Dr. F that Chris had never experienced any bowel issues in his past. Dr. F stated that the colitis had probably been there dormant, but that it was odd that the symptoms did come on so quickly.
A second antibiotic was ordered: Claforan.
Within hours of arriving at Kaiser, Fontana, Chris now had the following items flowing through his intravenous feeding tube: TPN, saline solution, and two antibiotics: flagyl and claforan.
(Note: Up until our fateful trip to Kaiser, Fontana, all blood tests were negative. In fact, his blood work was normal. (There seemed to be a) lack of continuity between doctors in the Kaiser system…Within hours of hanging the antibiotics, everything changed.) ”
Other than STEC with e-coli, the other rapid onset diarrhea illness is cholera. Indeed, everything changed possibly from giving antibiotics. Wow you had to wait 4 hours for an x-ray tech to arrive? Yes indeedy, great care from kaiser.
“9/13 Wednesday: Dr. P greeted us with a diagnosis of Shigella. She stated that the lab had not isolated the bacteria, however they had found shiga toxin. She explained that shiga toxin is the by-product of Shigella dying off. Of course, the antibiotics killed the shigella, if it was shigella, in our sons body, resulting in the toxins being released in his body, which is why antibiotics should not be administered. ”
Bingo. If there isn’t a bed available at one facility, the patients gets sent to a different facility that can do the correct care. kaiser probably didn’t want to haggle with other facilities for payment. Absolutely no reason why transfers should be delayed. LA area has many hospitals that could have done the job. I can’t imagine allowing my sick child to return to a facility that screwed up.
Davids words: “Finally, I have edited this segment to remove certain passages making accusations or ascribing motives to certain Kaiser officials. ”
Now that sounds very questionable.
Lets start with my name is Jill and my daughter who was sicken by raw milk name is Kylee. Who now is a beautiful 2.5 year old. She was 23 months old when she became sick April 9th and like Mary I will probably never forget the date she finally came home after 15 weeks July 13. That was the first of two hospitalizations this summer. The second was for her third abdomen surgery to reverse her ileostomy. All her medical complications and her whole story of her battle will be presented at another time.
I will be vague not because I have anything to hide, not because I am an under covered CIA agent working to provide false information on raw milk but because until I know my friends , the farmers in this story are safe from law suits and any legal battles are over. In due time I will speak fully of Kylee journey and her journey is far from over.
Mark, how about adding a consumers area on your RAWMI site about these things
Education when and why would be a good situation that children should drink raw milk? ADMIT that it is more HIGH RISK than PASTUREIZE MILK when it comes to pathogens. ADMIT that these pathogens can cause serious complications such as HUS.
TALK about things to be careful of/avoid/do. For example If your child has bloody poop then go to an ED with a good childrens nephrology department and tell them your child is at increased risk of ingesting deadly pathogens because they drink raw milk. WRITE the protocols for parents.
My daughter ended in the ED two nights before she was admitted to the PICU. What if I would have stayed that night? What if I kept her on fluids and monitored before going home for two nights. Her kidney values where already high but the times she came back in they were extremely high which indicated HUS especially with the bloody poop and that she was at an increased risk of ingesting ECOLI because she drank raw milk.
I have heard the know your farmer ask questions understand how they milk their cows statements so many times prior, during and after. Which we did and it didnt protect our family because honestly trusting isnt going to protect your family against ecoli 0157 when you are drinking a HIGH RISK food.
Agree on a warning label and encourage it with RAWMI LISTED participants. Make sure people understand that there is an increase risk to raw milk. Most people are not arguing that raw milk may have health benefits now found in pasteurized milk but deadly pathogens are not found in pasteurized milk that are found in raw milk.
If parents choose to still give their kids raw milk that their choice but if and when the next family finds themselves with a very sick child they might be able to seek help before it is too late.
Your child was sickened and you protect your farmer? You are a different class of consumer. When Mary’s son became sick she hired Bill Marler and went for my jugular. Perhaps this is one of the differences between getting your milk directly from a farmer verses from a store and not directly knowing your farmer ( like Mary ). Perhaps there is forgiveness and a little more humanity with farm direct sales….I do not know, but it is a hunch.
Why is it that you are different?
Why was there an iliostomy performed? This is the first time I have ever heard of that procedure being performed on a HUS patient. I get the renal function….but the intestines? Sounds like antibiotics killed off the gut….is that what happened?
15 weeks….that is a huge amount of time…..never heard of such a protracted length of in hospital HUS treatment.
I am so very glad she is doing ok now.
The day they gave Flagyl was day 3 of his illness, but day two of being in the hospital. So it had been three days of nonstop diarrhea and vomiting. His condition was deteriorating, new symptoms were beginning and all tests were coming back negative for everything. Did you notice that many doctors consulted before the Flagyl was given? In 2006, this was not an antibiotic that was bad to give if E.coli 0157:H7 was suspect. They gave it due to what was happening with his pain level and his stomach was becoming distended. By day three of a suspected foodborne illness, you should begin to get better. Chris was getting worse. The fact that Flagyl was given has never been an issue. The issue was the Claforan given on September 10th when he was diagnosed with ulcerative colitis. This is one of the antibiotics that should never be given if E.coli 0157:H7 is suspect.
In the past I have explained this also. After all the research I did on E.coli 0157:H7 and HUS, it is very clear to me that Chris had all the signs of what is referred to as pre-HUS. Many a child with an E.coli 0157:H7 infection has had their appendix removed only to discover that nothing was wrong with the appendix and then they went on to develop HUS. http://www.ncbi.nlm.nih.gov/pubmed/655853
Unfortunately, because HUS is so rare, most pediatricians have never observed a case as it is developing, especially if the child does not have a culture confirmed case of E.coli 0157:H7. There is no way to know when Chris was given the Claforan if it made Chris impending HUS diagnosis worse or it saved his colon.
So in the beginning when we were told that the Claforan could have caused the HUS we were outraged. This is evident based on what David posted in April of 2007. In retrospect, and after doing research, there is also a strong chance that the Claforan saved his colon. Many a child with HUS dies because their colon dies. The first death in the Jack-in-the-Box outbreak was caused by the colon dying.
The antibiotic issue is a moot point. We will never know the answer if it made Chris condition worse or if it saved his colon. As for being sent to our HMOs PICU in LA, this should have never happened. I guess timing is everything in life. Prior to Chris becoming ill, our HMO had contracted with Loma Linda for 20 years. They always received all the HUS patients directly from the HMO hospital in Fontana. It is about 11 miles down the road. Unfortunately, two years prior to Chris becoming ill, they stopped contracting with Loma Linda due to the financial issues this hospital was having.
Having taken the time to write all of this, lets stop. No one wants to have this all rehashed again. Chris became ill from raw milk. Other children also continue become ill from raw milk. HUS is happening to innocent children who drink contaminated raw milk. It is not the kids fault or the doctors fault. It is the cow shit getting in the milk. That is the issue. People who give raw milk to their children need to know it is high risk for pathogen contamination.
Sylvia, you have an interesting personality. You act like to are this wise know-it-all about everything. Look how you feel the need to debate me on what I’m telling you happend within our HMO regarding changes made post Chris’ hospitalization. Yes, Sylvia knows best. She is the expert.
Did I say they told parents what their options are? No. I said doctors can make the decision to send the patient to any hosptial outside the HMO regardless if they contract with them or not.
Also, I don’t know what kind of medical insurance you have, but with my HMO, all costs for everything are covered by them. The only cost to the patient is the copay.
Nope there sure isn’t.
As for tsking David, I was being facetious. I am quite sure if I offended David, he’d pull up his big boy pants and let me know. I doubt he needs you to saying anything in that regard for him.
Wow, how nice that you think I’m a “wise know-it-all about everything”. I’ve never claimed to that. Amazing that trying to have a conversation about issues is a debate to you.
I don’t believe you did say “they told parents what their options are” That is why I asked the question.
Are you feeling insecure and on the defense? If so, why? Not that I really care for an answer.
I’m not trying to be hurtful, just honest. You have much to add to this blog, but the know-it-all stuff has to stop. Look at what you just posted to Jill. Is this something you looked up on the internet? You may be a nurse, but believe me, Jill knows more than you do about the subject of E.coli 0157:H7/HUS and the damage that can be done to the body and brain of a child.
My dearest friend was at the hospital with me during the darkest hours. She has been a nurse for 30 years and had never heard of HUS. When she came to the pretend PICU in LA, she was in shock at where he was medically. She saw multiple system failure. She was trying to maintain a calm composure, but her eyes told me everything. They bugged out of her head when she was looking at the readings on the machines. She was preparing herself for him to die and wondering how in the world we could ever deal with the loss of our beloved son.
The reality with HUS is that supportive care is all that can be done until the Shiga toxin is done with the damage to the body. It takes 10 to 14 days to run its course. When you get to the other side, you are left with the long term damage. For some the news is good and for others its not.
Chris was one of the lucky ones (his kidneys are working for now) and Kylee was not (multiple organ damage). Life is not fair.
I want Mark to really get this!!! You see, being given antibiotics is not the determining factor as to the outcome for HUS. Chris was given antibiotics during a more vulnerable time in the illness and Kylee was not. There is no rhyme or reason to this disease. Kylee was more vulnerable because she was only 2 and her immune system was not as developed as Chris who was 7. However, in the same breath I can say the Lauren H. was 10 and she was not given antibiotics and she has permanent kidney damage. Again, no rhyme or reason.
Mark, you really need to get an education is E.coli and HUS. I can hook you up with a pediatric nephrologist if you are interested.
You get that from reading a blog? No one but you can make you feel inferior.
If you are referring to my post regarding the acute abdomen I was responding to Mark’s post as he said he hadn’t heard of the need for a ostomy from e coli. You really don’t know what I know, nor do you know if anyone knows more or less than I. That’s rather presumptuous of you.
A nurse for 30 years and never heard of HUS? I’ll leave that as it is.
http://jid.oxfordjournals.org/content/194/6/819.full?sid=f8b8859d-2910-46db-b517-2305364e199f
http://cid.oxfordjournals.org/content/early/2012/05/02/cid.cis299.abstract
http://pediatrics.aappublications.org/content/100/1/e12.short
“data argue against the use of antimotility agents in acute childhood diarrhea.”
http://jcm.asm.org/content/42/4/1652.full
http://jid.oxfordjournals.org/content/185/2/214.full.pdf
https://docs.google.com/viewer?a=v&q=cache:4iCmqHDM7h8J:pednephrology.stanford.edu/secure/documents/Hemolytic-uremic-Syndrome.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESiWbCqA-xkfJXHdZw8toXaFAMiyp8PvxCpPth_brRbgY10dQUcTrlx1hNAHBVfExNcqR1J57FtRi9s_eA4LvxTjojaj77u_QD_YIa0Zk8yRd7HONaN5uAE1ALycfIU3W6YUFmXv&sig=AHIEtbTpp33cGAwSNujoOVEh6OpFtStDrA
https://docs.google.com/viewer?a=v&q=cache:0eTM6LzsilUJ:oak-tree.us/articles/Peds-Review01.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESjBjNo_iFODq-vcK6c7SfiHDr7MkPM7uuUYCuksahZ-93SbxbybxFCtddvIRKbyQiUjhlXK9CMaM6zyA7tv–OqOV9kTBj-Cq9v04Iw9Yys5mbKtZ_rME_H8z5QfcY-UxftJ83e&sig=AHIEtbRHay1cZBt0qBU740GukzxM-mrPGw
http://www.drugs.com/disease-interactions/metronidazole,flagyl-iv.html
http://www.aafp.org/afp/2006/0915/p991.html
Indeed there was and still is. along with the state of California web site.
Jill,
I understand the limitations you face right now in terms of the matters you feel comfortable discussing. A parent in your position faces all kinds of difficult decisions. When you are ready to share more, I know many people here would like to learn from your experience.
One bit of hope I will offer up is that Kylee has a major advantage going forward, and that is the advantage of youth. I have known several young people who have either become seriously ill or suffered serious head injuries, and the fact that they were very young was a big advantage in their recovery process.
Just like you wouldn’t buy a car from a brand new company, but wait for a few years of tried and true tested performance.
Your support on the issue of outsourcing has been valuable to me. Your treatment of parents who have been treated for e.coli and HUS, not so much. I know I can be bitchy, but I’d like to B-slap you after your exchange with Mary above.
B-slap? We all have our opinions. Mary, at times appears to be very closed to any opinion other than her own. If someones opinions differ from hers, she appears to become very defensive. God forbid should you question something she says, because then you are attacking her. Or “blaming” the victims. I don’t recall ever blaming someone who contracted a disease. I have also said that when people do become ill, there is usually more than one factor involved to cause illness. If it was just one factor, then everyone would be ill, not a select few. By saying that, it does NOT mean that it wasn’t the contamination that was the deciding factor. It just means that for that ill person, they had a perfect storm within them for the illness to manifest itself.
As I have said in the past, by her words on this blog, it appears that the medical care her son received was substandard. He was given, antibiotics, anti-diarrhea ,narcotics, anti-emetics, all of which would exacerbate gut problems. Basic physiology, biology and microbiology-first year college. We also had research classes in my nursing school, and we use research to find answers.
Mark made a comment that he hadn’t heard of the need for ostomies with e-coli. I found some information for him and Mary’s response was totally uncalled for. I have no problem with people asking me to clarify what I post.
I appreciate you posting your story. The above shows, though, how far apart people are on this blog, how we are starting from very different places.
For instance, I don’t agree that raw milk is more high risk than PMO milk – given the choice between no milk and PMO milk, we will go without milk. I have a mathematics background and business finance degree among other advanced education; my view is based both on research, analysis, and personal experience – I have watched now almost 30,000 gallons of RM drank with nothing but immense health benefits to the drinkers.
We give people all the information relating to raw milk – positive, neutral, and negative. But I don’t think that would satisfy some of the people posting on here, since I don’t think the evidence supports it being labeled high risk.
When should kids be given and not given raw milk – that is also a highly debatable issue, and the presuppositions one brings to the table dramatically affect how it is answered.
when you say you “knew your farmer” did you actually go see the farm, or ask someone first hand who had? Knowing your farmer is about a lot more than a phone call, and this does need to be very clear to farm supporters.
Lauren and Eric in California were not so lucky. The doctors were clueless. E.coli 0157:H7 and HUS had not made a name for themselves yet in medical history.
This is where Bill Marler came on the scene and basically made history.
On another note, Chris presented like Eric. They thought he had appendicitis. This is a pre-HUS symptom; meaning that kids who present with pain looking like appendicitis go on to develop HUS.
Yes pathogenic bacteria was found in pasteurized milk in 2007 when 4 people died from pasteurized milk. When 48 people died in 1985 from pasteurized cheese in CA….that was pastuerized product. When 8 kids died from allergies from correctly pasteurized milk…this data does not seem to matter…not one little bit. How about UMPQUA dairy in OR two years ago, that pasteurized milk that made 23 people sick…that was Salmonella in pasteurized milk. Do people not understand…all foods can make you sick and even kill you.
Not one death has been recorded at the CDC from fluid raw milk since prior to 1972.
I am sticking to my message. I do not want any illnesses from raw milk ever….that is why we need good standards and RAWMI. I do not sell used cars. I teach raw milk and food safety as best I can. I also understand the great work being done at UC Davis at the Milk Genomics research center and know that raw milk cures asthma and crohns. Asthma kills 4000 people per year. The distracting words said here are just that. My true north is my true north. If a RAWMI LISTED farmer causes an illness….we will admit it and address the deficiencies adn move on.
When an airplanes crash….aircraft are not banned, instead the incident is investigated and things are learned..,pilots are educated and safety is improved. Air safety has never been better…but the FAA cares about aircraft safety. Unfortunately the FDA could give a damn about raw milk safety.
http://seattletimes.com/html/localnews/2012694556_aporumpquadairyrecall.html
I do not get it….is it blindness, ignorance or an agenda. I think the latter.
Chris was shitting and vomiting every 15-30 minutes for 4 ½ days. Every time Chris had a BM, the vomiting came afterwards because it was so painful. He would have tears coming down his cheeks. On day 3, things became so bad he experienced rectal prolapse.
Is it your medical recommendation to just let the child vomit? As for narcotics, do you suggest that when a child is suffering extreme pain, they should just be allowed to suffer? So from what you are stating, if you were the attending physician, you would let the child vomit every 15-30 minutes for almost 5 days straight as well as let them suffer excruciating pain. Adults who have had HUS describe the pain worse than childbirth. What kind of shape do you think a child would be in after 5 days of that kind of suffering? Would you really let your child suffer like that?
As for anti-diarrheal medicine, Chris was not given that, so I dont know why you are listing it.
The real problem is this pathogen is in our food suppy and children pay the price.
You hit the nail directly on the head Mark…only I would have capitalized “A-G-E-N-D-A.”
60 Minutes did a report tonight trying to figure out the “grid-lock” in Washington…not one minute
was devoted to the unseen AGENDAS! But you can bet the farm that is the operative word in a town bought by special interests! And while the Senate and House have their thumbs where the sun don’t shine…the corporation owned bureaucrats are the ones Making the Laws and regulating this nation.
And this is exactly how “they” want to do business…control, control, control.
Service to the People of the USA…that isn’t even on the radar…or…what an archaic quaint thought!
“We the People” have been sold out for the last 20 years with GE “phoods.” They (our government representatives) sold us out to the likes of those whose only concern is “the bottom line.” Our health as a nation means NOTHING to them…so to ask them to even consider constructing a process to produce safety standards in raw milk is really laughable. That is why RAWMI is so important. It represents genuine thought, concerns, systems that work for those who desire to produce real food. I pray it can survive the likes of the Monsanto’s and FDA.
Her response to my response after posting the state requirement for labeling, speaks volumes. I have no clue why she keeps stating that (paraphrasing) ‘I think I’m an expert’. Perhaps the links and facts that I posted have “jabbed” the reality of her belief system. People do get upset when their beliefs are challenged, whether internally or externally, otherwise other peoples words would be no bother to them.
There is much blame being thrown around on this site. Yet for someone to suggest that people here are blaming a child for its acquired illness is ludicrous and represents an irrational, desperate maneuver that arises from their frustration in those who refuse to capitulate to their way of thinking.
Children are indeed being singled out and victimized via a system that systematically harasses their parents and labels them as incompetent, reckless and neglectful for refusing to have their infant child vaccinated, for refusing to allow their child to be subjected to toxic chemotherapy, for choosing to educate their own child or for choosing to feed their child raw milk.
When a child or anyone for that matter becomes ill, who is at fault, other then a ubiquitous microorganism that is merely doing what is necessary in order to survive and maintain balance despite mans contempt for it and the natural world that it lives in?
To what extent does a doctor, farmer, or restaurant owner go in order to acquire an acceptable level of control and where do we draw the line?
Our desire to mitigate suffering, pain and death has prompted us and the powers that be, to self righteously manipulate people and the environment beyond what is natural and has resulted in a disruptive unsustainable scenario that not even RAWMI will be able to rectify.
Hopefully Herbert Stein’s Law is correct, “If something cannot go on forever, it will stop, or as Churchill observed, “the Americans can always be counted on to do the right thing, after they’ve exhausted all other possibilities.”
Ken
When do the “MOMS” care more about their children than their fathers? Get off your high horse, ladies.
And why is human life valued above all other life on the planet? On well-managed and humane farms, I have seen animals sent to the butcher before they grow too old, when they are still happy and healthy. In the human world, we simply park the “olds” in a nursing home and put them through humiliating “treatments” until they give up. Yet when a baby is treated this way, everyone is in an uproar! Far easier to get a baby, however, than an old and wise elder. Still, once you’ve got one, you may as well take care of them well. I know many MOMS that have breast-fed their children beyond the age of two years.
Completely irrational.
The politics of policy is driven by greed and facilitated by irrational emotion. The FDA loves a mom that cries in front of a senate hearing. They just love it. Who can vote against a crying mom.
Well….lets stack up who is crying…..it is the funerals of 4000 kids…..that is who is really crying. They are given no voice.
It is interesting to note that the pasteurized milk community has no blogs or commentary for feedback. When they have deaths from pasteurized milk…they shut down discussions and go CORPORATE SILENT using the best brand management consultants. When kids get sick from raw milk…it is food for blogs and we eat it and regurgitate it over and over and over. This creates news in its own right. News that is unbalanced and disporportionate to the injury.
Death is still worse than recovered illness.
My number one objective…no illnesses from raw milk. Just illnesses prevented.
The movement for freedom of food choice transcends gender and age.
Blindness, ignorance or agenda – – – take your pick. I think there’s even more to it than those three choices, but those will do for now.
http://i164.photobucket.com/albums/u38/boshaylady/boydrinkingrawmilkfromteat-1.jpg
If the average American gets sick 4 times a year, it most likely isn’t caused from one factor. Nutrition is one of those factors. For some, genetics is another factor. There’s environmental factors. The body can only take so many assaults before it tries to correct any malfunctions, deficiencies or outside/inside attacks.
For example: from what I’ve been researching, osteoporosis has a combined factor malfunction. Nutrition is a big factor in developing osteo, lack of sunshine (Vit D) another major factor, lack of weigh bearing movement is another. Any disruption in any of these 3 factors can lead to osteo, thus leading to other complications too.
If you are lacking in Vit D (which comes from the sun, food doesn’t have enough vit D to support the body), that lack of vit D will eventually affect your bones, your thyroid (the body is trying to borrow from Peter to pay Paul, it compensates from other areas to try and keep things balanced), your circulatory system becomes affected, as does your nervous system, your GI tract becomes affected, as does your muscles and tendons. Your kidneys also become affected.
Many of the various cancers, appear to be because that one cell mutated and spread. What caused that cell to mutate? It is usually multiple factors.
As for my son and I not getting sick…. about 5 yrs ago both my son and his wife were ill, it was a toss up from being the flu or contaminated chinese food they ate. Maybe it was both. Other than seasonal allergies, which he ignores, no, he does not usually get sick, and he eats junk foods too.
The last time I was ill was over 13 years ago, I got the crud when I went to my daughters bootcamp graduation at the Great Lakes, we were packed like sardines in a hanger in winter, where many many people were coughing, sneezing, etc. There were many factors that lead to me getting the crud. Life was really stressful at that time, I wasn’t eating all that great, I was working long hours, my immune system wasn’t up to par. That was the 2nd time in my life that I had the flu. Within 24hrs of the first symptom, I was taken to the ED for severe dehydration. At that time it was a perfect storm in my body that allowed the flu virus to take over. So no, I don’t usually get sick and I don’t always eat well, and I worked with many ill people on a daily basis.
I believe that what I said would be pretty much associated with everyone. Rarely is it one factor that causes illnesses or diseases.
Why do some life long smokers show no ill effects and others who smoke 1 or 2 years of their lives end up with cancer or emphysema? Why do people who never smoke or aren’t around smoke end up with lung cancer? Why does something affect one person and not another in the same ways?
During the Great Depression, Pellagra was epidemic in the US, especially the south. http://en.wikipedia.org/wiki/Pellagra It is caused by a chronic lack of niacin. My dad’s cousin died from that in the 1930s, (There was a lot of conspiracy theories that dads uncle poisoned his daughter) I showed dad a copy of the death certificate (Az allows you to get them free online) and it was Pellagra that killed her. Dad said she ate the same as everyone else. Which couldn’t have been correct. Being a 14yr old girl, she probably didn’t wonder the countryside as my dad did. He ate with his minority friends many times. The tortillas the mexicans makes added lime in it which allows the niacin from the huge amounts of corn consumed to be metabolized in the body. There were many younger sisters in that family; she had it and no one else did, why is that?
Unfortunately our medical and scientific communities don’t so much look into causes and those who do are stymied in their findings. The good doctor in the above link shows that he was stymied for his discoveries.
After reading a few of Mary’s posts I just had to say something. First off, I’m hoping Mary is a real person, sometimes you have to wonder.
How do we know Mary’s son got diarrhea from raw milk? Not only is there no way of proofing it. There is no reason to even think such a thing. Diarrhea is a symptom of malnutrition and the most common illness in industrialized nations like the U.S. All of us have had it and will have it again whether our milk is pasteurized or not.
If a raw milk dairy with one thousand customers has less than ten a day with diarrhea it proofs that raw milk is preventing illness not causing it.
Even if you believe that the offending bacteria could give someone diarrhea and that there was enough in the milk and at the farm, you wouldn’t know how it got there and if it was that which caused the persons diarrhea.
Diarrhea is a reaction to many things: allergies/sensitivity to something, viruses/bacteria/protozoa, chemicals, drugs, a malfunction of the gut and even stress.
If only a select few are getting diarrhea, then I would think there should be studies that search out why those people are susceptible to whatever bacteria and not the majority.
There are only so many ways bacteria can get into milk. The cow is contaminated, the environment is contaminated, the equipment is contaminated. The farmer is contaminated, the feed is contaminated. The storing area of the milk is at an inadequate temperature.
When they seek out causes of food poisoning, they are looking for a common denominator, for example: raw milk, or ground beef, etc. When they find a common source; raw milk or ground beef, they then take samples from the cows, poop, environment and samples of poop from the patients, they check to see if they are the same kind and if so, they further check to see if they are from the same strain. If all matches under the microscope, then the bacteria probably came from the contaminated source, if no matches, many times they just assume that is the cause. That’s it in a nut shell.
Genetics can be very confusing and apparently not an exact science. . It’s good to ask questions, how else do we learn?
When health departments speak of matches of bacteria fingerprints they are being deceptive.What “matches” are PFGE patterns.These patterns may match even when the two isolates are NOT genetically related. PFGE patterns only can be used to distinguish between isolates that both originated from the same colony of bacteria. Health departments have to assume that they are looking at isolates that were once clones of one original bacteria.Of course if you start with this assumption it isn’t surprising that the conclusion is that the two isolates “match”. The assumption cannot be proven and is not possible outside of a laboratory.
When the epidemiological investigation looks at common denominators ,they ignore the very things that are most likely to be the real cause of the disturbance in the digestive system.These are factors that we all admit can upset the balance in a system that is already walking a tight rope because of malnourishment. Malnourishment ,especially lack of minerals in food ,can be the reason that people’s systems are so easily destabilized.The real factors that are ignored are the biocides in the food, air and water and stress. All of these things contain a steadily increasing amount of toxic residues because of the war on bacteria that is our present food production,preservation and distribution system.
miguel
That is definitely deceptive. It is unjust that people are convicted on “assumptions”. Thanks for the information. I’ll be sure and share it.
miguel