If you don't vax for measles, be prepared to help your child through this...

Jim Gehrz via Startribune.com

Editor's Note: Author of the now-defunct Vaccine Times, Leart Shaka, has graciously allowed Moms Who Vax to re-post several of his articles. His work on vaccine education was immensely helpful. The story below is his, sourced from Maura Lerner's excellent Minneapolis Star Tribune article.

Little Mahi is very unlucky: he nearly died of measles. He contracted measles while traveling overseas. He was not vaccinated due to his young age. He was 9 months when his family left for Kenya. Although Mahi’s parents intended to get him vaccinated on time according to the recommended schedule, they didn’t know that although the first shot of the MMR vaccine isn’t given until 12 months, for overseas travelers different rules apply. Mahi should have been given a vaccine prior to his trip to Kenya. His chances of getting the disease would have been slashed by over 90% if that had happened.

Little Mahi is very lucky: he nearly died of measles, but he didn’t; he beat the disease. After contracting measles he had a 1/20 chance of getting pneumonia, which he unfortunately did. On August 10, his mother brought him to the emergency room with very high fever. Within days, baby Mahi was on life support, hanging by a thread.

“I didn’t think I’d be able to hold him again,” his mother said Friday, as she cuddled him in her lap.

[...]

On his fifth day in the hospital, Mahi took a dangerous turn. He was transferred to intensive care, hooked up to a breathing machine and given antibiotics to battle the pneumonia. For days, he was sedated and barely moved.

“It was really hard,” said his mother. “It was like watching a dead body.”

The medical experts were equally worried. Mahi, said Stinchfield, was “teetering near death.”

After nearly two weeks in intensive care, Mahi started to wake up, as doctors eased up on the sedation.

On Tuesday, they took off his breathing tube. “He opened his eyes and looked at me,” said his mother, and he squeezed her hand. “Look at this!” she thought. “I couldn’t believe he could be that strong.” When he started crying when she stepped away, she was thrilled. “Wow, my son knows me,” she said.

Little Mahi is lucky to have beaten measles, unfortunately 1-2/1,000 children who contract the disease will not be so lucky, despite the best medical care they can be given. Measles is not a trivial disease. It can land you in the hospital like it did baby Mahi, it can leave a child deaf, and it can kill. Do not be swayed by the conspiracy theorists. Do not delay.

Inject to protect.


Editor's Comment: Mahi was not vaccinated because he had not yet reached the 12-15 months of age recommended for the MMR shot (though he should have been vaccinated before traveling overseas). But what happened to him can happen to any unvaccinated child. Delaying a vaccine out of fear or because of recommendations from a vaccine-hesitant parent-friend puts your child at grave risk for those months that she is left unprotected, especially now that measles has come roaring back to life all over the country because people are not vaccinating their children. My kids have received two MMR vaccines. My eighteen-month-old had to receive her MMR booster (typically scheduled for four-years-old) just six months after her first one because of the Minnesota measles outbreak this winter. It's not the time interval that bothers me--it doesn't bother me at all. What bothers me is that anti-vax parents forced me in to the doctor's office for a shot two-and-a-half years early. 

Vaccines Cleared Again as "Culprit": or, Whose Mind Do You Trust?

For any parents out there seeking fresh reassurance that immunizations do not cause autism, perhaps this week's announcement of research results from the Institute of Medicine will provide some.

Using seventeen years of data, the institute found absolutely no link between immunizations and autism; more, it found that immunizations are overwhelmingly safe, and that bad reactions are exceptionally rare, especially considering how many vaccines are given across the globe.

But, tragically, those with a great deal at stake (mostly money) in perpetuating the falsehood that vaccines not only cause autism, but are responsible for a host of health problems, continue to deny the science and find ways to scare parents into skipping vaccines. As parents ourselves, we understand all too well how that visceral fear of harm coming to our children can be stimulated--and taken advantage of.

The National Academy of Sciences has nothing to gain by lying about the research. It is an independent body of researchers and scientists. The question of undue influence aside, the anti-vaxxers then ask if the science has been interpreted correctly. We would ask you to judge for yourself the qualifications of those minds from the Institute of Medicine (and all the minds responsible for producing the more than 1,000 vaccine studies the Institute analyzed) versus the qualifications of non-scientists, public relations professionals, and autism activists from anti-vax organizations like National Vaccine Information Center.

In order to continue believing the vaccine-autism non-link, you would have to believe in a decades-long conspiracy among the United States government, the greatest scientific minds in the country, university researchers, epidemiologists, including those from the Centers for Disease Control and the World Health Organization, pediatricians across the country, and drug-makers. That only a single man, over the course of this entire debate, has come forward to make "scientific" claims that immunizations and autism are related, is telling. One would actually think that more folks would take advantage of an opportunity to become famous--to be the one guy or gal who could definitely prove a link between vaccines and autism. More telling, though, is that that single man who did claim to find a link--Andrew Wakefield--faked his results, manipulated his subjects, kept that manipulated sample size to under fifteen, and was stripped of his license to practice medicine as a result of his fraud. The Lancet, which published this study, retracted it entirely. In contrast, the New York Times describes the Institute of Medicine this way:

The Institute of Medicine is the nation’s most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world. 

We then turn to concerns  that have some real science behind them. For example, this study found that while exceptionally rare, immunizations can cause negative effects in some immuno-compromised individuals (much like any medicine might). It is in this area of the study that you will likely see many anti-vaxxers flock to in order to proclaim that the study "proves" vaccines are harmful. What you won't get from them is context.

Let's take the finding that one of the risks of receiving the chickenpox vaccine is that, years after the vaccination, some people (immuno-compromised individuals, such as those undergoing chemotherapy) can develop pneumonia, meningitis, or hepatitis if the virus used in the vaccine in a weakened form "reawakens" because of that cancer. This, you'll hear anti-vaxxers say--and many already have--proves that the safety of vaccines is still in question.

Not quite. Here's your context. The exact same risks of developing meningitis, pneumonia, and hepatitis are present in individuals who got chickenpox naturally. No, that's not quite right--the risks for developing these health problems are far *greater* in those who had chickenpox naturally. Read: the risk is greater in those who were not vaccinated and who contracted chickenpox the old-fashioned way. Or the new-fashioned way, I suppose: at "chickenpox parties," where unvaccinated children are exposed to an infected child so they can gain "natural immunity" in the form of the chickenpox virus.

We do find it heartening that as more and more of these conclusions from wide-ranging, objective scientific research firmly establish that there is no link between immunizations and autism, the retorts from anti-vaxxers begin to sound as error-ridden as they, in truth, are. In fact, I have noticed a note of desperation creeping into some of the quotes I've been reading in the press. Take the quote in the New York Times article from Sallie Bernard of SafeMinds, which contends there is a link between vaccines and autism. She says,  "I think this report says that the science is inadequate, and yet we are giving more and more vaccines to our kids, and we really don't know what their safety profile is."

It is interesting that a survey of more than 1,000 peer-reviewed research articles on vaccine safety, which finds no link to autism and very few adverse effects in the population to any vaccine, is considered "inadequate" to Ms. Bernard.

If you're still not sure whose scientific judgment to trust, you can compare credentials. Ellen Wright Clayton, the chair of the IOM's panel, is the Craig-Weaver Professor of Pediatrics at Vanderbilt, the Director of the Center for Biomedical Ethics and Society. She is considered one of the country's leading experts in Inborn Genetic Diseases, and as been a member of the IOM since 2006.

Sallie Bernard is the founder and former president of a full-service market research and marketing consulting firm and is the parent of an autistic chid.

Here is the New York Times article on the new findings by the Institute of Medicine. Vaccine Cleared Again as Autism Culprit.

Letter to the Editor

UPDATE TWO: Unfortunately, the response from MN Parent was pretty disappointing. There was no real correction. Instead, there was a clarification that no study has been shown to link vaccines and autism. Instead of acknowledging the other errors in the piece, the editors felt they needed to validate the mother's search for "truth"--apparently even if in that search she misinforms thousands of parents--and use this as a reason they do not challenge her facts. Also, the editors disputed the information I gave them about the state with the highest rate of autism. I guess the CDC isn't reliable enough. It's enough to make me think that this publication has an anti-vaxxer pretty high on the masthead. It's really too bad...it's an otherwise nice magazine.


UPDATE: I received a gracious reply from the executive editor of MN Parent. There might be a correction run in the next issue. I will keep you updated.


Editor's Note: In the August 2011 issue of Minnesota Parent, a local free publication distributed in Minnesota, a mother was profiled in the magazine's "Real Parents" feature. The parent, Jennifer Vanderhorst-Larson, is the parent of a ten-year-old autistic child. She seems like a nice lady. However, in her profile, and uncorrected by the editors of the publication, she makes some statements about vaccines and autism that are egregious and false, including the jaw-dropping assertion that "1 in 28 Somali children" are autistic (They make up 1 in 28 in a population of diagnosed autistic children.) I was literally sick to my stomach after reading her profile and decided I had to speak up. Below find my letter to the editor. I am posting this to encourage other Moms and Dads Who Vax to speak up whenever the media fails to do its job when discussing this issue. When we remain silent, we agree. And members of the media cannot be allowed to fall down on the job on this issue, when lives are at stake. 

Dear Editors,

I was distressed and profoundly disappointed after reading the Real Parents in this month's Minnesota Parent. As a mother and journalist, I have always enjoyed the reportage and first-person accounts in your magazine. But upon reading Jennifer Vanderhorst-Larson's profile, I was struck dumb. You profile a mother of an autistic child who is involved with special education efforts. That's great. However, you allow her to speak as an expert on vaccines, autism, and even the incidence of autism in the Somali community, all the while not doing any fact-checking of her statements, and writing, as the editorial voice introducing her, that her child was diagnosed with autism after his fifteen-month vaccinations, instead of stating how old Cade was when he was diagnosed, which would have avoided creating a link in the reader's mind. As you know, study after study after study has found absolutely no link between vaccines and autism. As you also know, children and infants have fallen ill and died from vaccine-preventable diseases because people are not vaccinating their children because of a fear of this non-existent link.

Just to give you a sense of how badly Vanderhorst-Larson got her facts wrong, she says that there was no study on combo vaccines when her son was vaccinated nine years ago. In fact, in 1997, this study (http://cid.oxfordjournals.org/content/24/5/925.short) was published in Clinical Infectious Diseases about the safety of the MMR combo vaccine when given with another vaccine. In 2001, there was this study in the Pediatric Infectious Disease Journal (http://journals.lww.com/pidj/Abstract/2001/10000/Safety_and_immunogenicity_of_a_pentavalent.11.aspx) showing the safety of the dTap combo vaccine. Both were published ten or more years ago, before or within those first fifteen months of her son Cade's birth. More studies on combo vaccines have been published since (http://scholar.google.com/scholar?q=combination+vaccine+safety&hl=en&as_sdt=0&as_vis=1&oi=scholart). and all of them have found the combo vaccines safe. This was a crucial piece of information left out of the profile, and it makes me wonder if it was intentional. In any case, Vanderhorst-Larson's comment that there were no studies on combo vaccines when Cade was vaccinated is incorrect and misleading.

She also says Minnesota has the highest rate of autism. This is incorrect. In the latest, most comprehensive accounting of autism diagnoses in this country, the CDC found New Jersey had the highest incidence of autism, 1 in 94. 

Finally, in what I think is the most egregious mistake in her story, she says 1 in 28 Somali children in the Twin Cities have autism. She may not understand the statistics she is looking at: the Minnesota Department of Health estimated that of diagnosed autistic children in Minnesota, you could expect to find a Somali child in one of every 28 diagnosed children. This is a far cry from 1 in 28 Somali children, which is what she states in her profile. There is, in fact, no firm number on the incidence of autism in the Somali community--and that is why the CDC just funded a study to discover the incidence and to understand why it seems to be higher than other populations. I won't bore you with her misapplication of the word epidemic in connection to autism and the possibility that it is, in part, a genetic disorder.

It's disappointing to see the vaccine-autism myth handled in this way by a trusted local publication that aims to support and educate parents, and usually does. I believe the responsible thing to do in this case would to have been either to keep to Vanderhorst-Larson's area of expertise--education and founding IT companies--and edit out her comments on vaccines and statistics (unless you planned to fact-check those statistics and her claims about vaccines, which didn't happen) or to run an editor's note with her profile pointing out that autism and vaccines have not been found to have any link, despite numerous studies that have looked for that link. This is not a matter of opinion; if it were, I wouldn't be writing to you. This is a matter of science and public health, and it is reckless for a publication like yours to let a parent spread false, misleading, and downright scary information in a forum such as your Real Parents profile, which I bet is a very popular part of your magazine. (Definitely the first page I turn to!)  Errors like Vanderhorst-Larson's, which are very, very commonly heard in the anti-vaccination community, cannot go uncorrected. I beg you to run an editor's note correcting her misstatements of fact, lest a new parent read these comments and choose not to vaccinate her baby because of them. Let that parent, at least, make that decision based on facts, not falsehoods. Thank you.

Ashley Shelby

My Beautiful Boy: A Mom's Story

Editor's Note: One of the most important immunizations on the childhood schedule is the Hib and meningococcal vaccines. Few of us have seen firsthand the horrors of this brutal, quick-moving, and merciless disease, and yet we hear of cases in children and young people year after year after year. That this completely preventable disease still shows up in children is heartbreaking. That some parents still refuse to vaccinate their children against it is even more so. We are deeply grateful to Frankie Milley, mother and founder of Meningitis Angels, a nonprofit organization founded after the death of Frankie's son, Ryan. Below is her story. 

It is the end of yet another long day. It is once again midnight and I am at my computer working. I have had 13 years of these same days: Years of days without my precious son: Years without his laugh, his voice, his smile, his wit, his hugs, and his love. 

Ryan was my only child. He was eighteen, just graduated from high school, preparing for college and planning a pro golf career. He was a healthy young man one day and the next day meningococcal meningitis struck.  Within hours he lay dying on an emergency room table, with blood coming from every orifice of his body. 

I stood there helpless as I watch the life and blood leave my beautiful boy. His father reaching for him repeating the words, Daddy loves you baby boy over and over again.  The last words we would hear Ryan say were to his dad. They were: “I know.”

In the days that followed I found there was a vaccine that could have prevented Ryan’s death.  No one ever told me about it. I was in the medical field for over twenty-five years. How could I have not known that meningococcal disease not only kills but leaves its victims with severe disabilities?  Had I known Ryan would have been vaccinated.

The medical examiner told me Ryan would have lost all four extremities, been blind and deaf, had no kidney or adrenal function, severe brain damage, and more.  This disease had come from nowhere right out of the pits of hell. In just a few hours it took away his dad’s and my rights to ever be called dad and mom again, to dance with my son at his wedding, to ever hold a grandchild, to have his comfort in our old age when one has to leave the other. In just a few hours this preventable disease would forever change our life. It would leave a void and a grief that would never disappear.

In the days, weeks, months, years to follow I founded Meningitis Angels and what has become a lifelong work of advocacy. I began to realize there were many kids out there who were dying or being debilitated  with not only meningococcal disease/meningitis but also pneumococcal meningitis and even a few with Hib. Hib had been eradicated for the most part in the US due to recommended vaccination.  However, we have seen it resurface in areas where vaccine refusal was present. 

A few years later we would see pneumococcal on the decline due to new vaccine and more recommendations and in the last five years we have seen a decline in adolescent and young adult meningococcal disease.  I have fought hard, participated in and even led the fight at times for the recommendations and mandates around the country. 

The meningococcal vaccines are indicated for ages 2-55 and thanks to CDC recommendations they are now recommended for those kids age 11-18 and all who enter college.  Recently one of the vaccines’ indications changed and is now recommended for infants down to 9 months with compromised immune systems. 

Infants under one year now remain the most vulnerable of all for meningococcal disease.  Among our Angels are several infants and toddlers who have died or have been left with severe debilitations including brain damage, severe seizure disorders which lead to brain surgery, organ failure leading to transplants, the loss of arms, legs and even their little faces. Parents watch helplessly as their precious children literally rot away and body parts self-amputate and still die.

Two vaccines are being reviewed by FDA for approval of usage down to age 2 months.  CDC is gathering public opinion in four regional meetings on whether or not to recommend these vaccines when available. Though I praise them for this effort I feel in my heart that meetings in Seattle Washington, Denver Colorado, Concord New Hampshire and Chicago Illinois do not give a fair representation and voice of the whole country. This is why we have started our campaign Protect Infants Now which includes an online petition. 

Meningitis Survivor Helen Keller said, ““Alone we can do so little; together we can do so much.” I say if infants and children had a voice and a choice between deadly diseases or a vaccine to prevent it they would choose vaccination. But they don’t so we have to be that voice: One of fact, science and choice of health and life.

You can sign our petition at Protect Infants Now . They can learn more about meningitis and contact me though our Angels at www.meningitis-angels.org 

Moms Who Vax Newsletter, #1

Parent-to-Parent

We have discovered that, at least in Minnesota, the public health authorities and medical establishment is starting to pick up on the fact that parent-to-parent communication is an effective tool for increasing immunization rates. I recently participated in a panel discussion in front of local media to mark National Infant Immunization Week. On that panel were three eminent pediatricians (including the Head of Pediatrics at the Mayo Clinic), as well as noted public health authorities, me, and the amazing Shannon Duffy, whose daughter died of a vaccine-preventable disease, and not because she was choosing not to vaccine. Take a look at the link for her story. Shannon's story is so profoundly moving and devastating, and it is an effective way to get the message across to new and expecting parents.

After that media event, I stood with these brilliant doctors and talked about vaccine-resistance. They said all the right things, talked about explaining the lack of a link between vaccines and autism, about continuing to press the message in appointment after appointment, but at a certain point, I said: "You know what would have helped make the decision easier for me? If the word 'death' had been used in my discussions with my pediatrician. She allowed me to delay my son's MMR (by 3 months) without fighting me on it at all. Telling me that measles can cause death would have kept me up at night." The doctors looked at one another, but Shannon nodded vigorously. Doctors have become afraid of using the D word, even when warranted. We are warned time and time again of the risk of death from anesthesia, rare as it is. Why do we not hear this, even in passing, in the pediatrician's office? Is it too harsh? I got the feeling from the doctors that it was. But it's all in the delivery, I reminded them. You don't get the James Mason God-voice and boom "Death!" You say, gently, that you are ethically obligated to let them know that the risk of not vaccinating includes serious disability or death. 'Nuff said.

Patient Liaisons

Since the NIIW panel, the Minnesota Department of Health has asked me to be part of two more panels, including one on vaccine resistance. I also noticed that at my son's pediatrician's office, they are looking for volunteers to act as liaisons between the medical community and parents, not just for vaccine issues, but including them. I plan on volunteering for this and would urge anyone in the Twin Cities to volunteer as well. If you don't live in Minnesota, consider offering this service to your pediatrician. It's a given these days that nearly every practice will have some unvaccinated children. It is in our children's best interest to get these kids vaccinated, because an infant in the waiting room is incredibly vulnerable to a sick unvaccinated child. Whooping cough and measles have both recently been spread in this manner. Consider approaching your pediatrician with a proposal to run a few casual gatherings with new parents. Have a doctor present, of course, but as a parent, your experience has much more weight in so many cases (as sad as this is). 

Law Changes

In Minnesota, we are looking to close the loophole that allows conscientious objectors to vaccines to face no obstacles in getting their children admitted to school. We do not know where to begin. If any of the Moms (or Dads) who vax out there have advice, connections, pointers, etc., for us, we'd be grateful. We are targeting our state legislature, and think we may have a representative who will present the bill, if we can only get this thing started. Several of our Minnesota Moms Who Vax feel the anti-vax movement in Minnesota is ramping up again. There is even a new "political party" based on vaccine rejectionism, called the Canary Party. We are looking for advice from knowledgeable folks about how to build this grassroots movement of vaccinating parents, to help vaccinating parents to shake off the complacency and become more active in this fight. Please e-mail us at momswhovax@gmail.com if you have any tips or would like to help.

Success Story

Finally, I just wanted to share this heartening story from our Mom Who Vaxs, Carly. Her cousin comes from a family of non-vaccinators; their father is a chiropractor who has taught his kids that vaccines cause all sorts of horrible things. This person's sister is not vaccinating her new baby because "a friend of mine's child developed Down's Syndrome after being vaccinated." Knowing this as background, Carly's story may brighten your day.

Hi ladies,

I had to share a small piece of good news on the immunization front. My cousin John's baby arrived a few days ago. I went to visit them yesterday at the hospital, and they ARE vaccinating the baby! Their son got the Hep A vaccine at the hospital. John said he spoke to a pediatrician that was willing to sit down and explain everything to him, which he appreciated, and his wife is vaccinated herself and in favor of it. John is also getting himself vaccinated and the doctor started him out with the whooping cough vaccine.

So in this case, a pediatrician taking a hard line and refusing to discuss the immunizations would have turned my cousin off. The soft approach worked better in reaching this "middle of the road" parent.

Hope you both and your kids are well!

Carly

Join In

For so many of us, immunizing our children is just another part of the insanely busy work of being a parent. It is so routine that many of us feel complacent when it comes to the dangers posed by those who don't immunize. Today I ask you to shake off that complacency and consider joining the effort to bring up immunization rates in every community in order to protect infants, immuno-compromised children who can't be immunized, and vaccinated children who fall in that tiny percentage of the population for whom vaccinations are not effective.

Join our mailing list by e-mailing us at momswhovax[at]gmail.com.

Peace of Mind

As a new or expecting parent, you'll have to get used to the idea that your child will be sick. A lot. It's part of life, this acquisition of viruses and bacterial infections. And while it can be hard to watch your child cough, sniffle, become feverish, battle a sore throat, etc., at least we know her immune system is growing stronger and figuring out a way to let her live among other human beings without being crippled by illness. 

That being said, you can probably expect to feel the way I still feel, after two kids, every time my kids get perhaps a little sicker than usual: anxious, worried, and perhaps even a little obsessed. For example, my nineteen-month-old has been sick for the last five days with what was a mysterious but brutal ailment. She was listless, not herself, eyes red-rimmed, running a high fever, and crying a lot. Her brother had been complaining of a sore throat. A visit to the doctor, and the follow-up three days later, showed no strep. He was off to school a couple days later, none the worse for wear. But my daughter was just not doing well at all. I found myself looking through my book of childhood illnesses, scrutinizing symptoms, wondering what she might have and if I should bring her to the doctor (my son's doctor didn't think it necessary to bring my daughter in, since his strep test was negative). 

As soon as I opened the book that old familiar feeling appeared. Blood and heart racing, getting hot, almost sweaty, feeling panicked. Measles? Meningitis? Mumps? Pertussis? I churned for about half a second, until I realized: wait, my daughter has been vaccinated against these deadly diseases. At least, I thought to myself, I don't have to worry about those. The peace of mind I felt instantly upon realizing that I had vaccinated my daughter (and son) so they would not contract these awful, sometimes fatal diseases was one of the greatest endorsements of my decision to vaccinate. Sure, I could move on to other worries, like strep throat (which is what it turned out to be after a visit to Urgent Care), but I no longer feared for my daughter's life. And while that may sound an extreme reaction to your child's illness, trust me, it's sort of a boilerplate reaction. Somewhere, in the back of your mind, a parent wonders if the sickness might be something awful.

My thoughts turned to parents who don't vaccinate. How, I wondered, could they cope psychologically with common childhood illness, not knowing if it was measles or the rather harmless roseola? Could it be pertussis or just a bad cough? The uncertainty would be my undoing. And in the middle of an outbreak, like the measles outbreak of Minnesota and the pertussis outbreak that killed children in California, the fear would be too much to bear. 

If you are trying to decide whether to vaccinate your children, consider your future self, waking up in the middle of some future night, and finding your baby running a terribly high fever in her crib. You don't what's going on--this is your first, perhaps. Do you want to run, in your head, the gamut of all the potential deadly vaccine-preventable diseases your child could have, signaled by this fever, that rash, this cough, these enlarged glands? Or do you want to have at least the peace of mind to know that the odds are hugely in your favor that your child is protected from the worst childhood diseases out there, and that this fever might indicate Fifth's Disease or Roseola or another annoying but basically harmless childhood virus? Do your future, sleep-deprived self, and your child, a favor and immunize.