Strikes Against the MMR (measles, mumps, rubella)

For those who question the wisdom or evidence in support of the schedule currently recommended by our CDC, there are generally many layers of questions.  Many question the schedule itself; with yet another dose of flu shot being recommended this year and the HPV (human papilloma virus) vaccine recommendations being expanded again-- our vaccine schedule seems quite full to many, especially in the first two years of a child's life (at least 25 shots by age 2, a total of 36 doses).  It certainly is more aggressive than most of the rest of the world.  (google a few and notice just how widely they vary from nation to nation, both in schedule, frequency, and diseases vaccinated against.  For example, Japan's schedule- which recommends 22 doses by age 2, or the Swedish schedule- which recommends 21 doses by age 2 as opposed to ours)

Then there are many who question the one-size-fits-all approach instead of considering each child's environment, personal health history, current health, family history (genetic predisposition) and even weight/body type (there is no dosing difference between a shot given a 5 lb or 10 lb newborn, for ex).

Then we come to questions and concerns about individual vaccines.  Many families feel more comfortable with certain shots than others, and their concerns may vary from shot to shot.  Their concerns may be ethical, practical, or medical in nature.  This is why so many feel insulted and frustrated when all vaccine questions are answered with a pat "oh, don't worry about autism!  That's been disproved so many times."  Whether or not it has, that generally is not the sum and total of a parent's concern on this issue.

Lately one vaccine seems to keep popping up in my life, whether it's reading yet another online story about the "horrible measles outbreaks", or an article in a magazine in which parents are encouraged to speed up their child's doses in preparation for travel, or in an admission form for kindergarden... that vaccine is the MMR.  The issues with the MMR are myriad, and I would like to list them one at a time.  My purpose is simple: to explain clearly why parents may desire to delay or omit this vaccine.  I am not a medically degreed individual, just a parent who enjoys research, can stomach reading medical studies until her eyes start crossing, and desires to empower other parents to make their own decisions, in discussion with their own trusted care providers.  Perhaps this list will be a good starting point for a conversation with your own medical care provider.  I certainly hope so!  As always, please follow the links in order to read primary sources on your own.

1. The MMR is a live vaccine-- that's how it is classified according to its Merck packaging.  According to the CDC's Pink Book, "Live attenuated vaccines are produced by modifying a disease-producing (“wild”) virus or bacterium in a laboratory. The resulting vaccine organism retains the ability to replicate (grow) and produce immunity, but usually does not cause illness."   A few of the main concerns regarding live-virus vaccines:
- Live vaccines seem to be better at provoking more immunity (because they are more like the original disease), and they unfortunately have more side effects for the same reason. The US has therefore traded the live oral polio vaccine (OPV) for the inactivated polio vaccine (IPV).  Again quoting from the Pink Book:

"The more similar a vaccine is to the disease-causing form of the organism, the better the immune response to the vaccine.")  "When a live attenuated vaccine does cause “disease,” it is usually much milder than the natural disease and is referred to as an adverse reaction. [...] Live attenuated vaccines may cause severe or fatal reactions as a result of uncontrolled replication (growth) of the vaccine virus. [...] A live attenuated vaccine virus could theoretically revert to its original pathogenic (disease-causing) form. This is known to happen only with live (oral) polio vaccine." 

The CDC states that live-virus vaccines are only a danger to those with certain immunocompromisation (HIV etc), however many parents wonder if those listed sources of  are the only potential sources-- could family (or personal) history of autoimmune disorders indicate susceptibility?
- encephalitis (brain swelling)-- Travel of a virus into the brain is a rare complication of several viral illnesses, including measles, and is a topic of ongoing research.  Unfortunately, it seems live virus vaccines also carry this risk, as this case study illustrates and as the vaccine inserts themselves state (see all three types of encephalitis listed under "Adverse Reactions").  According to the Mayo Clinic, "Secondary encephalitis often occurs two to three weeks after the initial infection. Rarely, secondary encephalitis occurs as a complication of a live virus vaccination." this in turn can be a factor in developing autism or other learning disabilities.  Encephalitis/encephalopathy is listed as a "Table Injury," meaning it is recognized as a possible vaccine reaction that will be compensated by the federal Vaccine Injury Compensation Program.  Two children were compensated for it this earlier this year.
- live virus vaccines "shed," meaning they are able to be passed on from a recently vaccinated person.  The NVIC's report is here.

2. The MMR is a combination vaccine- by that I mean that it is not a shot for a single illness, but rather for three:  measles, mumps and rubella.  The technical name is "polyvalant." It stands to reason that giving the body three separate pathogens to identify and mount antibodies against would be more taxing than giving one at a time. One recent study (published in Human & Experimental Toxicology) analyzed reported adverse vaccine effects by number of vaccine doses given at one time, and found

"Our findings show a positive correlation between the number of vaccine doses administered and the percentage of hospitalizations and deaths reported to VAERS. In addition, younger infants were significantly more likely than older infants to be hospitalized or die after receiving vaccines."

(Interestingly this is also being discussed among vets and dog-owners, as multiple vaccines at once is linked with higher adverse reactions, especially in small dogs. Example here.)  Many parents (myself included!!) would like the option of monovalent (single dose) vaccines, but separate shots for each MMR component are no longer available in the US though they can be found in parts of Europe and in Japan.

3.  The MMR is a viral vaccine- viruses are very very very tiny, so small they can only be seen under an electron microscope.  So, when they are cultured, there is no way to isolate just the viruses.  Rather, infected tissue (of whatever animal the virus is being cultured in) is used.  While many efforts are made to purify and test the tissue for harmful substances, there is no way to test for every possible contaminant:  you can only test for what you know might be there. Viral vaccines therefore are most at risk for being contaminated.  Several examples include the contamination of several batches of past polio virus vaccines with simian virus-40, now implicated in numerous human cancers (I explored this topic more thoroughly here.), or pig virus contamination (PCV1) of the rotavirus oral vaccine in 2010.  The FDA suspended the use of the vaccine during investigation and determined that the viral contaminants would not harm humans.  However, the very fact that it was unexpectedly present in a vaccine is a bit alarming.  (Was 4 weeks really long enough to evaluate long-term effect on children?)  There have also been findings of contaminants in measles virus cultures and a monkey virus contaminant in RotaTeq.

4.  Measles is not a dangerous disease in healthy children- contrary to what our media would have us believe, measles is neither deadly nor risky in healthy children.  Sure, the typical symptoms are not exactly pleasant:  high fever, cough, runny nose, watery eyes, and a rash (according to CDC), but even when measles infection in childhood was nearly universal, with 3-4 million cases per year, the number of deaths was approximately 500/year (source: Pink Book).  That works out to a 0.017%- 0.0125% death rate, or between 1 in 6000-8000. (If you got the measles, you had about a 1 in 7000 chance of dying of it, and if you survived, you were immune for life.  No more chance of dying of measles ever again in your life.)  Just for perspective, in 2015 in the US our odds of dying in a cataclysmic storm or from heat stroke are around 1 in 6, 700.  Our odds of dying from choking on food are double that (1 in 3000), and our odds of dying in a car accident or poisoning is about 1 in 110. (All numbers from the National Safety Council.) The odds of dying of measles are about the same as dying in a tornado or hurricane... way less likely than dying of choking, and even less likely than dying from poisoning.

There have been no measles deaths in the US for the past 10 years.  In other countries, where malnutrition and poor sanitation are concerns, measles complications can be fatal (which isn't surprising, given that anything is life-threatening for a malnourished person)-- however even then, the WHO says:

All children in developing countries diagnosed with measles should receive two doses of vitamin A supplements, given 24 hours apart. This treatment restores low vitamin A levels during measles that occur even in well-nourished children and can help prevent eye damage and blindness. Vitamin A supplements have been shown to reduce the number of deaths from measles by 50%.

The virus is quite contagious due to coughing but is fairly easy to eliminate from surfaces, "rapidly inactivated by heat, sunlight, acidic pH, ether, and trypsin. It has a short survival time (less than 2 hours) in the air or on objects and surfaces." (Pink Book)

5. Mumps is not a dangerous disease in healthy children- similarly to measles, mumps was once viewed as a childhood rite of passage (my mom remembers getting it as a child).  Like measles, mumps infection confers life-long immunity.  The options for supporting the immune system through the infection with vitamins, nourishing foods, rest and herbs are myriad when the patient is a healthy child. Mumps symptoms typically are swollen glands under the throat, headache, fever, tummy ache and malaise.  Even the CDC FAQ on the disease states:

Almost all people with mumps fully recover after a few weeks. During the illness, many people feel tired and achy, have fever, and may have parotitis. Some may feel extremely ill and be unable to eat because of pain around the jaw, and some may develop serious complications. Men and adolescent boys can develop orchitis, which rarely results in sterility. Women and adolescents girls may develop oophoritis. Meningitis and loss of hearing can also occur, and in rare cases this hearing loss can be permanent. The most serious complication is encephalitis, which can lead to death or permanent disability, although rarely.

As with many "childhood" diseases, disease complications tend to increase with age; in this case, only males that have gone through puberty are at risk for potentially developing sterility.  It is worth noting that with vaccination, formerly childhood diseases such as mumps have shifted to diseases which adults or babies are more at risk for (due to moms not being able to pass on natural immunity via breast milk, and vaccine protection wearing off in some individuals).  This is concerning to many.  As far as the encephalitis risk, see point #1 which points out that this is also a danger with vaccination-- arguably more of a danger than it was with the natural disease itself.

6. Rubella is a danger to unborn babies of moms who've never had rubella- it is not a danger to healthy children, nor even to unborn babies of moms who have had rubella.  So the question is whether or not routine vaccination of children is the most effective, most risk-free way of avoiding infection of moms during pregnancy in order to avoid CRS (congenital rubella syndrome).  Would it be advantageous to allow children to contract it naturally, allowing girls to then convey that rubella protection to their own infants later on via breast milk? Vaccine immunity can wear off in many individuals, and doesn't transmit as well via breast milk. Perhaps a vaccination for girls who show no immunity to rubella by age 12 would be a better option?  (This study on CRS in women in Saudi Arabia discusses just this, mentioning that immunizing children seems to limit CRS in younger mothers while increasing risk of it in older mothers as immunity wanes, while selective vaccination does better at allowing for life-long natural immunity but doesn't lessen the incidence of rubella itself.  However this is not necessarily a bad thing, as the study describes rubella as a "mild, self-limiting viral infection.")

7. Concerns with the measles component include many indications that it compromises gut health- Dr. Natasha Campbell-McBride (MD) has written extensively about this in her book Gut and Psychology Syndrome, where she describes the findings of live measles infections-- of the same strain in the vaccine-- in the guts of certain patients, causing extensive gastrointestinal problems, and surprisingly, a host of chronic and neurological conditions, among them Autism Spectrum Disorder. Read one study finding association between measles virus in the gut and developmental disorders here.  The gut dysbiosis-autism link has begun to be studied from several angles, among them the use of probiotics to reduce symptoms of autism (especially after this study in mice- here summarized by Autism Speaks).

8. Concerns with the mumps component include indications that the vaccine is ineffective and falsified data was used to obtain FDA approval- this article summarizes the current 3 court cases well.  Essentially, the concern is that Merck used one form of the attenuated mumps virus in testing in order to show 95% efficacy, when in practice that efficacy has not been true since at least 1999.

"Merck fraudulently represented and continues to falsely represent in its labeling and elsewhere that its Mumps Vaccine has an efficacy rate of 95 percent or higher. In reality, Merck knows and has taken affirmative steps to conceal -- by using improper testing techniques and falsifying test data -- that its Mumps Vaccine is, and has been since at least 1999, far less than 95 percent effective." (Read more in the court documents for Chatom v Merck. )

There is evidence supporting the idea that the mumps component is not efficacious from India as well.

9. Concerns with the rubella component include its origin in tissue taken from aborted babies, which raises ethical concerns for many, and health concerns due to the presence of foreign human DNA. - From the MMR insert:  the rubella component contains the "Wistar RA 27/3 strain of live attenuated rubella virus propagated in WI-38 human diploid lung fibroblasts." As this 1964 paper entitled ""The Limited in vitro lifetime of human diploid cells" explains, "WI-38 and WI-44 [came] from female human fetal lung. All embryos were obtained from surgical abortions and were of approximately three months’ gestation."  (And as I understand it, the numbers refer to the number of cell lines that were "tried" before this cell line worked... so many many more than two babies' bodies were used to develop just those cell lines.)  The cell lines used to culture the current rubella vaccine came from a healthy human child whose life was ended by her mother at 3 month gestation for no medical reason-- many parents who believe abortion to be murder find any connection to aborted fetal tissue abhorrent-- even those who believe in the efficacy of vaccines.  Until a new medium is found for the rubella vaccine line (as the pope has urged Christians and pro-life individuals to clamor for), many parents find it reprehensible to use the current rubella vaccine (as well as other vaccines using human tissue obtained through abortion), and as such would object to the MMR.
- Those who may find no ethical dilemma in the use of cell lines originating in aborted human babies still may have concerns about the medical consequences of the injection of any tissue containing foreign human DNA-- recently, researcher Helen Ratajczak implicated the use of human (fetal) DNA in vaccines in the rise of autoimmune diseases, among other factors (published in the Journal of Toxicology).  Here is part of her explanation of why this may be:

"Because it's human DNA and recipients are humans, [...] That DNA is incorporated into the host DNA. Now it's changed, altered [... and the] body kills it. Where is this most expressed? The neurons of the brain. Now you have [the] body killing the brain cells and it's an ongoing inflammation. It doesn't stop, it continues through the life of that individual"  (source)

Another analysis of vaccine safety data has implicated the human tissue in the varicella, Hep A and second dose of the MMR in rises in autism disorder.  (Article from the Journal of Public Health here). Levels of human tissue in vaccine samples were found to be far above the current "safe" level.  The human tissue is implicated in a rise in childhood leukemia and lymphoma as well. (quote from study author Dr. Deisher here.)

10.  Childhood infectious diseases involving fevers (such as measles, mumps and rubella) may actually be beneficial in healthy children.  
- There is evidence that infectious diseases in childhood are protective against chronic or autoimmune diseases later in life, reducing the risk of cancer, asthma & allergies.  Fevers have even been used as part of cancer treatments and infectious diseases (including measles!) were found to cure disorders of the kidney in the past.
- Other research has collaborated the "old wives tale" that fevers always come before growth spurts, perhaps because the stimulation of the immune system by disease provides a "push" that allows the child to then grow.
- The protective/positive effects seem to be due partially to the effect fever/infection-suppressants has on the gut flora of children, and partially due to the need for all aspects of the immune system to be balanced and properly developed (Th1- cell-mediated immunity which includes the use of fevers, Th2 - antibody immunity).  The same mechanism that will kill tumor cells gets trained to "clean up" by killing viruses using fevers.  Hippocrates, the father of modern medicine, was reported to say:  “Give me a medicine to produce a fever and I can cure any disease.” Maybe he was on to something.

My point in summarizing these 10 "strikes" against the MMR is not to suggest that anyone who uses the MMR is stupid, uneducated, or irresponsible-- no, my goal is to explain that the reasons why SOME parents choose not to use this particular shot are varied, not one-size-fits-all.  If you hear that a friend or patient, client or family member has chosen to skip this vaccine, remember that they may not be worried about "that guy who said the mercury in the MMR causes autism."  They likely have multiple reasons for their choice, based in ethical, medical, or personal reasons!

Potential Vaccine Schedule (Selective & Delayed)

EDIT:  April 16, 2014
I continue to get a fair bit of traffic on this post, and several folks have asked me for an update. I leave this original post with all its edits as a testatment to my own "journey." It really has been a journey, one of growth & movement, not of stasis.

I've gone from "vaccines are awesome and make us so much healthier" to "wow... 40 vaccines in two years really seems intense, and giving more than one at a time kind of seems a bad idea" to "I think we'll wait until after their brain and immune systems are more developed (so after age 2)" to "vaccines are less important to health than gut health, proper nutrition- especially fat-soluble vitamins-and a strong immune system, and don't work as well as they claim to, so let's focus on the latter" (where I was as I wrote the above posts) to "vaccines have really dangerous side-effects that are far more common than ever thought- including ADD, ASD, asthma, allergies & other auto-immune failures, and wow, are they adequately safety-tested?" to "vaccines actually assault gut health and immune systems and are pushed by biased people who stand to gain from vaccine adoption, and why aren't they truly safety tested at all." As it standsI veiw vaccination is a last resort, even then it would be with MUCH precaution (vitamin loading, detoxing, and PRAYER). Most probable are the mumps & varicella vaccines before puberty if we can't find the natural diseases somewhere. (Interestingly there was a recent outbreak of mumps at Rutgers University... all of the young adults who got it were fully vaccinated.)

In your own journey, you may want to think through the role of hygiene & nutrition in the decline of "vaccine-preventable illness" as WELL AS the decline of diseases that aren't vaxed against (if vaccines are so essential, why did cholera & typhoid also decline at the same time as diptheria?); to read the vaccine failure rates (80% of kids with whooping cough are fully vaxed- the flu shot has a dismal 1% improvement rate-- vitaming D has 8%); also to read the vaccine clinical trials and assess whether you find their "control" group acceptable (never is the "control" group of children given a saline injection or a sugar pill; they are ALWAYS given another vaccine, making it very difficult to assess true effects, and the trials are seldom blind. Double-blind controlled studies are "the gold standard" in science.). You may want to research conflicts of interest in our own CDC... honestly, do we really trust our government in the health field at all? they've had fat & sugar all wrong for the past 50 years and sure look down on nutrition & herbalism! Lastly, two more books to read are Gut & Psychology Syndrome (Dr Natasha Campbell-McBride) and Healing the New Childhood Epidemics (Dr. Kenneth Bock) which come at vaccine risks from oblique angles. Both doctors are still pro-vaccine by the end of it, but they say they should only be administered to healthy kids, and by their own standards, we really don't have very many healthy kids in the US!!

Vaccines are the "sacred ow" of the medical field right now. I don't think most doctors are actually taught about vaccines-- more along the lines of "vaccines are awesome; moving on." (I have yet to meet a pediatrician who understood any of the many reasons why parents might object to our current schedule; no, it's not just about "that one crazy Wakefield guy whose autism research was totally disproved." Sigh.)

The more I read about vaccines, the more I find them to be the absolute opposite of everything we know about caring for our bodies: they are the complete antithesis of natural. We NEVER get diseases injected directly into our bloodstream; much less falsely weakened diseases paired with heavy metals, antibiotics & known poisons. Our bodies are primed to screen pathogens through several "barrier levels:" skin w its protective bacteria & acid mantle; mucous membranes with their legions of white blood cells; stomach with its HCl; gut with its probiotics galore. And then we are programmed to fight disease quite effectively, if properly supported; and once we get one disease, it's usually the last time we ever will. By contrast to vaccines, the more I study herbs, the more impressed I am that this is the route we SHOULD be pursuing; using natural elements that our bodies recognize, taken in ways that our body can use-- aroma, contact, ingestion-- NOT injection. I keep seeing studies pop up along these lines-- curcurmin in turmeric being more effective than the Pc at preventing lung disease; vitamin D from food & sun being more effective than the flu shot... Why aren't we pouring our efforts into studying THOSE! Seems like the classic egg v. egg-substitute or butter v. margarine mistake. We keep thinking we can out-do God instead of figuring out how to better use what He's already given us.  

As a final resource, I highly recommend Rachel Weaver's books "Be Your own 'Doctor'" and "Be Your Child's Pediatrician"-- she's a master herbalist/midwife. We've seen simple herbs cleanse our son of parasites we didn't even know he had (and suddenly end his constant congestion) and heal the eczema our daughter been fighting for years in a matter of 2 weeks. I've seen a friend's baby come back from the brink of death (intubated in the hospital) with the application of herbal extracts (essential oils) -- he coughed up the mucus that was choking him to death within seconds of application, and was extubated & heading home the next day. It's just amazing. God is so much smarter than us; the best we can hope to do is figure out how to use what He's made-- the glory of God to conceal a matter; the glory of man is to seek them out, as Proverbs puts it!


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Today (originally 11/16/10), I'm putting up an acceptable (to me) vaccine schedule.  As a bonus, you get to see my reading list.

Tomorrow, I'll put up an explanation for why we are thinking this way, with questions for you to consider as you make your own family vaccine schedule.

Then, on Friday, you'll be able to read (if you want) a detailed "paper" of sorts going in more technical/ medical detail.

That's the plan- short & sweet, then a "Questions to Ask" guide, then finally the full shebang which you are under NO obligation to read. :)  It's written mainly for my own peace of mind (I actually like writing papers), but our family doctor will be getting a copy, and I *might* try to do more with it if I think it's good enough.  EDIT:  this became my 3-part series on Keeper of the Home.  I have uploaded the full Q & As on chicken-pox & polio, and abbreviated ones for all the possible shots.

So, without further ado, here is it is: (DTaP 4 doses, Pc 2 doses, Hib 1 dose):

12 mos--DTaP Dose 1 (can provide partial immunity against diphtheria, tetanus, whooping cough/pertussis)
15 mos--  Pc Dose 1 (can provide partial immunity against meningitis)
18 mos-- Hib sole dose (can provide partial immunity against meningitis)- no further doses needed if given after/at age 15 mos.
2 yrs- Pc Dose 2- no further doses needed if first dose given at/after age 12 mos.
3 yrs- DTaP Dose 3
4 years- DTaP Dose 4 (no further doses needed if given at/after age 4)

10 years- MMR & varicella vaccines, separated by at least 6 mos, only IF our kids don't get chicken pox (varicella), and rubella (German measles) naturally.  We're hoping to catch the live versions, so if you have a kid down with any of those, invite us over!! :)

(We do not plan on getting flu, Hep B or A, rotavirus, HPV or IPV vaccines.)

**Edit September 2011- because of sickness, we have held off on several vaccines and will be even more delayed; I'd rather not further tax my daughter's immune system when it is already fighting off a virus, even if it's "just a little cold."  I am also seriously considering completely skipping the DTaP completely with our next child(ren), due to the danger & relative uselessness (if the current epidemic is any indication) of the pertussis components  (don't really care so much either way about the diptheria elements).  However, because tetanus is a real danger and there are no vaccines available before age 2, I am making myself aware of which hospitals/treatment centers have TIG (tetanus immune globulin) on hand in the event of an accident before my children are old enough to get the single tetanus vax.  Proper wound cleaning & care is the best defense against tetanus... and keeping an eye on my baby while at the park.

Reading list:
The Vaccine Book: Making the Right Decision for Your Child (Sears Parenting Library)-by Bob Sears (though he has an alternative schedule, he is fundamentally FOR vaccines)
Vaccinated: One Man's Quest to Defeat the World's Deadliest Diseases- by Paul Offit (essentially a biography of the man who made many of the vaccines still used today- gives a lot of insights into his world view, motives & motivations)
Vaccines: What Every Parent Should Know-Paul Offit & Louis M. Bell (try not to let its oversimplified tone insult your intelligence so much that you throw it away after one chapter)
CDC Vaccine Guide

Cautionary:
The Vaccine Guide: Risks and Benefits for Children and Adults- by Randall Neustaedter
The Virus and the Vaccine: Contaminated Vaccine, Deadly Cancers, and Government Neglect- by Debbie Bookchin & Jim Schumacher
Make an Informed Vaccine Decision for the Health of Your Child: A Parent's Guide to Childhood Shots- by Mayer Eisenstein
"A User-Friendly Vaccination Schedule" by Donald W. Miller, Jr.
"The Danger of Excessive Vaccination During Brain Development" by Russel L. Blaylock
"The Challenge to Mass Vaccination" by Barbara Loe Fisher
"How We Are Making our Children Sick," by Sean Manning, in Pathways, issue 20
"A Personal Perspective on Vaccination,"by Jean McAulay in August/Sept 2008 of Today's Chiropractic Lifestyle

Thoughts on the "Parents, You've Been Lied To" Articles.

My thoughts on the back-and-forth

A pro-vaccine article has been circulating lately; you may have seen it, entitled "Dear Parents, You Are Being Lied To."  Hosted on the Illustrious "I F-ing Love Science" page, authored by "Anonymous," you can tell it's a real winner... a friend asked for my thoughts on it, so here are a few thoughts as well as some links you can check out to do your own research.  [An excellent, well-supported (full of links!!) rebuttal can be found here:  "Dear Parents, you are being lied to."]

- The article title begs the question-- who, exactly, is doing the lying?  The article never says... because makes no sense. There is no organized "they" who is financially or otherwise served by sending out lies... People who are cautious about vaccines or doubtful that they are worth their inherent risk (all drugs have risk & side effects) have either seen negative effects of vaccines first-hand or they've been researchers who changed their minds as they read for themselves. People who don't view vaccines as the modern savior are generally challenged at every turn & very much in the minority. On the flipside, there is a very strong bias-pressure to love vaccines, with our own CDC almost completely composed of men & women employed by vaccine manufacturing companies. There is a definite group of people who stand to gain by encouraging vaccines. Parents who choose not to face many obstacles, and health professionals who speak out face even more.  Here is a great article comparing the vaccine-SIDS question to the x-ray-cancer question a generation ago.

- The "measles outbreak" that caused such a hubbub was at the time of the outbreak, 8 kids... none of whom died. The totals for measles the entire year for the entire US last year was under 200... hardly the panic-worthy epidemic the media implies. Measles IS very mild in healthy kids; comparing it to measles in malnourished kids is totally unfair. It's documented that a Vitamin A deficiency (a fat-soluble vitamin, so one lacking in any starvation, carb-heavy, diet) makes measles far more serious. In normal kids it's usually about as "serious" as a cold...

"Several recent investigations have indicated that vitamin A treatment of children with measles in developing countries has been associated with reductions in morbidity and mortality. The World Health Organization (WHO) and the United Nations International Children's Emergency Fund (UNICEF) issued a joint statement recommending that vitamin A be administered to all children diagnosed with measles in communities where vitamin A deficiency is a recognized problem and where mortality related to measles is ≥1%. [...] Vitamin A is a necessary substrate for preserving epithelial cell integrity and in addition plays a role in immune modulation." (Study: "Vitamin A Treatment of Measles")

"Vitamin A deficiency is a recognized risk factor for severe measles infections." (Study: "Vitamin A for Treating Measles in Children") 

- As far as safety tests go, there are NO-- literally zero-- vaccine studies where there is a vaccine-free control group. All required shots are tested against another shot, never against a placebo (with the exception of the flu shot). So these tests can only say that a shot is more or less safe or effective than another shot... a true double-blind study with a control group is the "gold standard" of science. Also, vaccines have never been tested in conjunction with one another; they are tested one at a time, though they are administered 5 at a time (or more), and in quick succession (within a few short months of each other-- we'd expect someone who had a cold and then got the flu and then got strep to react to each differently than a person who just got strep). There is no safety data at all on the type of administration that is the recommended norm here in the US.  Two recent studies have found correlations in infant death and vaccine numbers:

"The US childhood immunization schedule requires 26 vaccine doses for infants aged less than 1 year, the most in the world, yet 33 nations have better infant mortality rates (IMRs). Using linear regression, the immunization schedules of these 34 nations were examined and a correlation coefficient of 0.70 (p < 0.0001) was found between IMRs and the number of vaccine doses routinely given to infants. [...] These findings demonstrate a counter-intuitive relationship: nations that require more vaccine doses tend to have higher infant mortality rates." (Source-- this study examined infant deaths relative to number of total vaccines recommended) 

"Our findings show a positive correlation between the number of vaccine doses administered and the percentage of hospitalizations and deaths reported to VAERS. In addition, younger infants were significantly more likely than older infants to be hospitalized or die after receiving vaccines. Since vaccines are administered to millions of infants every year, it is imperative that health authorities have scientific data from synergistic toxicity studies on all combinations of vaccines that infants are likely to receive; universal vaccine recommendations must be supported by such studies."  (Source-- this study examined infant hospitalizations & death relative to number of simultaneous vaccines received)

- As to WHY there are no studies comparing vaccinated & unvaccinated kids,vaccines are considered so essential to safety that to withhold them -- even on tests intended to ascertain whether they are indeed essential to safety-- is seen as "unethical." Talk about the cart before the horse! However, many parental groups have offered up their members as volunteers, because they already intend to not vaccinate.  Populations who refuse to vaccinate for religious reasons, such as the Amish, would be valid control groups, or for a new vaccine, even children otherwise vaccinated but receiving a placebo for that new shot (which is clearly not proven to be effective or safe!) would be acceptable. Or, start with a retrospective survey of matched groups of children, controlled for other variables, with the variable being full vaccination or no vaccination... so long as the study participation was in no way tied to the government (due to fear of punitive action over differing medical opinion being viewed as "parental neglect"-- Justina Pelletier, anyone?), most parents who have foregone vaccines would jump at the chance to participate!!  If I can imagine three scenarios for true placebo-controlled studies, why can't professional researchers who make scientific investigation their full-time jobs come up with even one?

-  Funding for studies coming from a vaccine manufacturer tends to bias results.  As an example, a recent Cochrane review of all the data on flu shots found that studies sponsored by vaccine companies tended to be more favorable than those done by independent parties. Third-party-researchers do exist-- or teams made up of both "special interest" (vaccine-cautionary) and pharmaceutical (pro-vaccine) representatives could do it. There are a hundred feasible ways that fair testing could be done.  While all researchers SHOULD be trying to disprove their hypothesis, in reality most are likely to attempt to affirm their own beliefs. However anything that comes up with a vaccine-cautionary bent will face much more scrutiny than anything done in "support" of the majority opinion.

"This review includes trials funded by industry. An earlier systematic review of 274 influenza vaccine studies published up to 2007 found industry-funded studies were published in more prestigious journals and cited more than other studies independently from methodological quality and size. Studies funded from public sources were significantly less likely to report conclusions favourable to the vaccines. The review showed that reliable evidence on influenza vaccines is thin but there is evidence of widespread manipulation of conclusions and spurious notoriety of the studies. The content and conclusions of this review should be interpreted in the light of this finding." (Source-- Cochrane Review on Vaccines for Preventing the Flu in Healthy Children")

- Speaking of funding... does it not strike you as odd that drug companies only agreed to make vaccines (drugs) if they were financially shielded from any safety-related lawsuits?  If an automobile maker would only sell a type of car under the condition that they didn't have to pay any damages if it malfunctioned, we'd probably assume there was something wrong with the car!  This piece makes the excellent case that, in the words of pharmaceutical companies themselves, vaccines are "unavoidably unsafe."

- A final word regarding specifically the investigation of a link between autism and vaccines.  It is lunacy to say there is "no found link."  Just read a few of the studies amassed here (a fairly exhaustive list of research done on vaccines & their long-term effects, specifically ASD).  There is research on many aspects of this issue, and none show "no link."

Why I Ask What I Ask

I just re-read an excellent book, and this quote jumped out at me as capturing so well why I take the time to research rather than take for granted, and then go further by encouraging those around me to research, too.

"Priya never recieved her MMR due to her egg allergies, but otherwise was fully immunized.  After putting her on an elimination diet, she improved greatly.  She started to grow, and to sleep better.  She was happier and more alert. The dietary changes helped her, but her immune system remained hyperactive and hypersensitive, and never fully recovered. Priya died of an anaphylactic reaction to a trace amount of peanut in an egg roll.  I wish I could turn back time.  I wish I knew then what I know now, about the effects of vaccines and heavy metals on a developing immune system.  I sought out the people I thought would help, but I was sent down a path that led to tragedy."
~ Dr. Anju Usman, MD speaking of her daughter in a presentation on nutrient therapy & a biomedical view of ASD.  Quoted in Healing the New Childhood Epidemics, by Dr. Kenneth Bock (MD)

I never want a friend of mine to have to say those words.  If even one family is spared that kind of "I wish I'd known" burden because they looked into something rather than just going with the flow, then all the effort of blogging, posting, reading, talking and writing will be worth it.  In this world we all will suffer; there's no way around it.  But I would far rather have suffering come from something I could not prevent or foresee than through something I brought into my own life, even unknowingly!  Let's always try to go ahead with eyes wide open!!

This is why it's worth it to me to bring up issues like vaccines, water purity, breast-feeding, responsible farming and cheap manufacturing from child slavery.  Yes, it risks offending some because they think I'm judging them (I'm not, I promise.  I'm just asking you to ask some questions for a minute.).  But if the price tag might be higher than you're willing to pay, wouldn't you want to know that up front?  Again, I'm not saying I KNOW the final price tag on any of these or other issues-- my goal isn't to put my own answer out there for everyone to agree with.  My goal is to get the questions, the prayers, the asking started, so that God can guide you, whomever you are reading this, in areas where you might not have thought to even ask for guidance.  In each of these areas (and many more besides), someone else did so for me.

(Dr. Usman, quoted above, had her first 3 children fully vaccinated (minus the MMR for Priya) on schedule and all three of them suffer from many allergies and auto-immune conditions.  She chose to not vaccinate her youngest, and he is free from any such disease.  While this isn't a controlled matched study, it is startling.  I highly recommend the book! And no, Dr. Bock isn't anti-vaccine; he's just leery of the current CDC schedule and certain ingredients in today's vaccines.  He has a suggested vaccination schedule in an appendix of his book.)

Our Saga Through the Land of Sucknswallow (A Quest to Diagnose & Overcome Posterior Tongue/Lip Ties)

Liam at 4 months, Paris, France

I have one child napping and one, well, protesting napping, but at least in his bed, so I hope to get this story up.  I've been postponing it until I had some sort of happy ending... or at least something new.  I have even stopped posting much on Facebook, because who wants to be the one with the perennially depressing statuses?  To those of you who asked how Liam was doing, thank you.  It means so much that you didn't forget about us and our plight, that you cared, that our struggle wasn't "out of sight, out of mind" for you!  And for all of you who wondered and never got around to asking, here you go.  The short answer is that by God's grace and through many efforts, Liam is eating almost normally!  Today I actually had to stop nursing him to correct his sister, and his squeals of protest nearly brought tears of joy to my eyes-- my baby actually wanted to keep eating??  Last Sunday my son's screams actually made it into the sermon he was so loud-- the culprit?  A bottle.  Most moms would have blushed (and I did, a little), but I was on cloud 9 when instead, my son's wails stopped and he fell fast asleep, hungrily nursing.  This is the same kid who it took HOURS to convince to nurse mere weeks ago.  The times, they are a-changing!  (Liam later took that same bottle without any fuss that same day-- I think the little Prince didn't find it warm enough at church.  Poor nursery workers.)

So... where've we been?  Already three friends have had some of their own struggles illuminated and eased after hearing Liam's story, and I know I spent hours searching the web for stories similar to ours in the hopes of getting hints as to Liam's diagnosis, so I type this up in the hopes that it will spare someone else pain down the road.  (I've already posted a brief version with some helpful background images/video here.)

I guess our journey began 10 minutes after Liam was born.  (Well, it could possibly have begun three years earlier, with his sister's birth, but that story isn't done yet.)  Deliciously happy as only a new mom can be, I still noticed that his "latch" was very shallow-- his upper lip was tucked in instead of flanged out like it should have been, and he didn't want to open his mouth much at all.  I pushed down on his chin to help him open wider, and figured he'd learn as he grew.  We didn't have any feeding problems those first few days, when my milk was still thick "liquid gold" colostrum-- his sucking was strong enough to draw it out just fine.  However, I noticed that his latch was always shallow, and he never did seem to untuck his own lip or open up wide enough on his own.

Over-Active Letdown, Foremilk & Acid Reflux Come to Play
Then, about 4 days post-partum, my milk came in.  As with Eowyn, it came in in pints, quarts and gallons.  I felt like I was swimming in it, and poor Liam was trying to figure out how to nurse from a fire hydrant.  (My let down is extremely intense, let's just say.  If I could patent it I could probably sell it to Super-Soaker...) I pumped off as much as I dared, but didn't want to pump too much and risk making the problem worse (since milk supply depends on demand in the end).  My heart sank as I noticed Liam finding nursing more and more difficult, just as Eowyn had.  Signs of acid reflux crept in-- not wanting to be laid on his back, projectile spitting up-- as well as signs that he was taking in too much "foremilk"-- green poop, fussiness, and very rapid weight gain.  Again, way too similar to Eowyn.  I immediately began probiotic drops and worked to reduce my milk supply with block nursing (nursing only on one side for several hours at a time) and with pumping off a few ounces prior to feeding Liam.  I tried cabbage leaves and other herbs to try and reduce my milk supply.  Milk oversupply often leads to acid reflux in babies, so I was zealous to try and help him.

At 12 days old (7/6/12) we took Liam up to NC to be circumcised by a pediatrician/Jewish mohel.  That is a whole 'nother story, but this pediatrician -Dr. Laura Sinai- was on. the. ball.  Not only did she explain to us why Liam was so ruddy (bc we'd delayed cord-clamping, which she applauded), she also asked us if we knew he had a tongue tie.  A light-bulb went off in my head, and my answer was "No, but that explains a lot!" I remember when she told me to try nursing him to comfort him after the circumcision and me thinking "once again, nursing does not comfort my baby." So by this point nursing was already becoming difficult for both baby & mom.  I called the lactation consultants at Greenville Memorial Hospital, and based on what I was saying she recommended that I see my family doctor/pediatrician to get a referral to an Ear Nose & Throat (ENT) specialist to have the tie clipped.  Tongue ties are simple to diagnose and simpler to treat, was the impression I got. The next day we saw our family doctor and the Era of Questions began.  He didn't see a tongue-tie.  Liam demonstrated his ability to stick out his tongue beautifully, and the scales registered him as 10 lbs 14 oz, so he seemed to be eating just fine.  Ok... maybe Dr. Sinai was mistaken?  Maybe all the issues stem from my oversupply?  By this point I was beginning to have a fair amount of pain when Liam nursed, and I didn't know why.  Liam was also fussing at the breast, and clicking with every suck, which I knew wasn't normal.  His latch was still shallow and milk often dribbled out of his mouth when he ate.  I posted to FB on July 9th "he has NO problem gaining weight, but he gets really frustrated eating with my super-fast let down. He doesn't even suckle sometimes, just lets the milk run into his mouth, lol. Thanks for praying-- I hate to cause him more pain... but if he's getting frustrated while nursing instead of being comforted, that's a lot of "pain" for him, too."

"Your Baby's Fine, Honey"
Wanting another opinion, I called the hospital and got an appointment with the lactation consultants there.  I ended up waiting a good deal past my appointment time and while waiting my milk let down.  This meant that by the time Liam did nurse (with the consultant watching), it was a better feeding than most.  Weighing him before and after showed him taking in 1 tsp less than 4 oz in 6 minutes, leading the nurse to exclaim "that's what we call a vacuum cleaner!"  By the end of the visit he weighed 11 lbs 1 1/2 oz, and both LCs assured me that they didn't see a tie, that I should cancel my ENT appointment, and that all problems with Liam's seal, etc, were just him trying to protect himself from my forceful letdown & oversupply.  I was told that my pain should resolve by 6 weeks or so, and that I should keep expressing before nursing him so the letdown wasn't so forceful to him.  Nursing was the best way to stretch his frenulum if it was a bit tight.

While every mom wants to hear that her baby is perfect, something didn't sit right with me.  Another month of pain?  And if the problem was my milk oversupply/OALD, why had his latch been so shallow at birth?  Why was he clicking with every swallow, even when the flow was slow at the end of a feeding?  To make matters worse, Liam was now choking/aspirating milk, and he was still regularly projectile vomiting impressive amounts of milk.  My pain was worsening, not improving.  Many friends--I particularly remember my sister-in-law-- told me to go with my maternal instinct, to not let anyone convince me I was crazy, and to not rest until I got answers.  So I called every "lead" I could find-- a friend's mom who was an LC, a pediatric dentist, the lactation consultants at another hospital, a friend who is a speech-language pathologist, friends whose children also had ties.  The overwhelming impression I got was that IF this was a tongue-tie, clipping (or cauterizing or lasering) it would be the best solution for all involved.  But we still didn't know if that was what it was.

"Hey, There MIGHT be Something Wrong, but No One Around Here's Ever Heard of It"
Dr. Jen Fogle of Ashby Park Pediatric Dentistry gave us our next clue (7/16/12):  "I think this might be a posterior tongue tie, but I've only ever operated on one before, so I'll want a second opinion before I do anything." A posterior tongue tie?  What is THAT?  More research, and I started reading a lot of articles by a pediatric dentist in Albany, NY, named Dr. Larry Kotlow.  In the meantime, I wrote "sigh. still needing wisdom on William's possible to tongue tie. Pediatric dentist today thinks it's a posterior tie (tricky to diagnose), but would want a consult w a specialized lactation consultant then another apt to actually do the procedure. I am not sure whether to keep pursuing the issue or not. I womder if something totally different is going on and I'm just wasting our time and money." Despite this, I made an appointment with an ENT recommended by local LCs as very pro-breastfeeding and very careful.  That visit was a total disappointment.  Though the doctor was kind, he had never heard of a "posterior tongue tie" and said Liam looked anatomically normal.  He counseled me to take Sudafed to partially dry up my milk.  For one thing, Sudafed & I do NOT get along.  For another, this still didn't explain why Liam's latch had been poor since Day 1.  Yet another LC visit, this time at Spartanburg Regional Hospital, at least confirmed that Liam was not "normal."  Though she couldn't tell me what was wrong, she did tell me that he was basically not sucking at all, and that his tongue wasn't moving properly as he suckled.  She measured his intake of liquid and it was around one ounce, which was remarkable, she said, because he hadn't sucked at all-- he was essentially just drinking whatever flowed into his mouth, thanks to my strong let-down... but that same let-down was what drowned him on most every feeding.

For the next few weeks I went around and around in my mind, out loud to Ryan, and even on paper, making lists & charts, praying and wishing someone could at least tell me what was wrong.  Was it pyloric stenosis?  Was yeast/Candida a factor?  What about the fact that Liam sucked his own tongue?  Why did he cringe after yawning widely (was it from reflux?)? Why couldn't he nurse at all lying down?  Did he tend to stick his tongue out to the left?  Why did the skin above his upper lip turn white when he nursed hard?  At what point do we just accept our child's limitations and love him as is?  How far do I keep pursuing answers? 

Following Crumbs, Grasping at Straws
By now it was August and Liam was resisting eating.  His weight gain had plateaued, and while to all outside eyes he was still large for his age, my mother's heart ached to know he was not eating as much as he should, nor was he happy about what he did eat.  I remember we were at the beach and I got a phone call from an old friend, an SLT.  She had never heard of posterior tongue-tie, either, but had researched it and asked her colleagues.  She asked if she could come observe Liam.  YES!!!

Her visit was another "crumb" to follow and gave me support and hope that not only was something wrong, but it could be made right.  It was helpful to hear from her a working theory that might explain most or all of his symptoms. The following is from her notes (for the sake of any mom wondering if your child might have something similar going on):

Slight facial asymmetry w/ L side appearing slightly weaker than right. Able to achieve lip closure at rest.  Tongue w/ slight deviation to L @ rest.
Suck:  Weak latch to finger w/ decreased ability to form tongue groove around finger. (ie tip of tongue more flattened vs. forming a groove or bowl). Tip of tongue did not extend beyond gums when sucking.
Nursing: Mom attempted to flatten nipple to make it easier for him to latch. Audible clicking noted as he attempted to latch. Decreased tongue groove again noted w/ inability to extend tongue beyond gums.  Rapid swallows w/ continued clicking/ inability to fully latch noted when mom’s milk let down.  Mom reports pt. coughs chokes fairly frequently, especially towards the end of the feeding.
Findings: Liam appears to demonstrate reduced range of motion (ROM) in his tongue, both anterior and posterior (forward and back) as well as decreased ability to form a groove to assist in sucking. (This could also be due to decreased ability to move his tongue forward.) It is also likely that he may have a poor posterior tongue to palate seal when initiating a swallow (due to decreased ROM), which can decrease his ability to protect his airway when swallowing. As he becomes more fatigued from attempting to suck, he is more likely to have increased difficulty handling the milk as he attempts to swallow it, which can lead to coughing/ choking.

I posted the question to Facebook friends, desperate for anyone with another hint for me:  "does anyone know of any reason for a poor latch besides tongue tie (of any stripe), overactive letdown, and cleft lip/palate? We've pretty effectively ruled out the last 2 and are stumped about the first. I know for a fact that Liam does not latch properly-- hasn't since the first nursing session at 15 minutes old. I also know he chokes at the ends of most feedings and also tends to aspirate when he spits up. But WHY!???"  I felt deeply the weight of responsibility to care for my son, to make the best decisions and somehow steward our time and money well in the process.  Meanwhile, Liam was not improving, and no one was calling me back.  (I am very UNimpressed with our LCs in Greenville county!)  He refused a bottle because it was too tiring to him-- his suck had deteriorated that much.

At church on August 19th a friend mentioned that her friends back in NC had dealt with something that sounded like Liam's issues.  She thought it might be tongue-tie, and that they might have gone to NY to some doctor up there to have it resolved.  She gave me their name to look up on Facebook, and mentioned that they had a horse farm.  Following up on every lead I got, no matter how small, I searched online for anyone with their name, and sure enough, I tracked down an email on a horse-seller's website.  On the off-chance that this was actually the right address for the right family, I sent an email explaining our situation and asking for help.  With the speed only a mother who'd been in my shoes would have, this kind woman answered me hours later. YES! Three of her children had tongue ties, and YES she knew of some names to give me.  A lactation consultant in NC, a phone call to an ENT she recommended near my sister's in Raleigh, and that afternoon I had an appointment with another ENT for later that week.  In God's providence, I was already planning to stay with my sister that coming week.

Posterior Tongue Tie It Is!
While the second ENT visit didn't prove to be the magic bullet I so hoped it would, he did at least confirm that Liam had a significant posterior tongue tie.  He snipped it with scissors right there in the office, told me to stretch it out 5 times a day, and said I should see improvement soon!  While Liam did start sucking his thumb and drooling-a sign of increased mobility-that day, he went on complete nursing strike.  He absolutely hated the stretching I had to do, and for a while we had a baby who refused both bottle and breast.  My mom and Eowyn started praying, and finally I was able to get him to take a bottle.  I made an appointment with an occupational therapist in Greenville (through my cousin's OT--Kathie Duhon of ATS Kids!), to see if suck training would help Liam.  My college roommate referred me to a Facebook support group for moms of tongue-tied children, and this proved very helpful.  Seriously, it's either the people who have been through it before or who personally know you who care enough to help you through it!  (Yeah, the other people I'd called- repeatedly!- still weren't calling me back...)

The OT confirmed that Liam was very "disorganized" in his sucking.  She watched him refuse to nurse, watched him struggle to get down a bottle, and helped me pick a bottle that worked the best for him.  She told me he had laryngomalacia (floppy larynx) and a mild form of sensory integration disorder-- which is why he slept so dang much and nursed best in the dark/quiet of night. She gave me some exercises to work on his oral defensiveness (his resistance to things touching his mouth), his hyperactive gag reflex, as well as to try and strengthen/organize his suck.  She advised me on which pacifiers might help him practice (the Soothie and gumdrop brands).  And she encouraged me to let him suck his thumb, which he preferred above all else. :)  I bought a pack of NUK baby tooth brushes and started doing therapy with him.  Now I was one of those moms.  A friend of mine whose son basically had all of Liam's symptoms but worse gave me a sensory brush and explained brushing and joint compression.  I added those to my "to-do-daily" list.

A mom on the FB support group gave me the name of a lactation consultant in Georgia who was familiar with posterior ties, and I had a skype consult with her.  She was mostly focused on helping me with Liam's total resistance to eating, and also just offered support.  I mainly fed Liam in his sleep or from a bottle, though sometimes --for no apparent reason-- he'd nurse without a fuss.  Certain positions-- dancer hold, me supporting my own breast, leaning back with Liam sitting up-- did help him latch a bit deeper when he did latch.  He was still clicking, sputtering and choking, and spitting up out his nose at times.  His weight gain was slow, but never dangerously so.  I still had a lot of pain while nursing-- it felt like he was chewing on me, and I also had the deep shooting pain that indicates a yeast infection in the milk ducts, and so far, nothing was touching it (believe me, there is nothing I haven't tried).  The overwhelming consensus I got from the FB support group, and from Liane (my lactation consultant) was that revision with scissors by the ENT I'd seen probably wasn't enough, especially when they saw pictures of Liam's upper lip-- "that lip tie is almost CERTAINLY part of the problem! If the ENT didn't know that, he probably doesn't know what he's doing with PTTs either."  The advice I got from everyone "in the know" was: "Go to Dr. Kotlow." I waited two full weeks to see if there was any change after the scissors revision, but with a sinking heart realized nothing was really improving.
Sept 8th post:  "reeeealy praying that Dr Kotlow in Albany, NY is able to help us (Liam & I fly up & back Tuesday). Liam has a tiny cold that makes eating a nightmare. He panics after sucking a few seconds because he can't breathe well out his nose, which makes his swallowing difficulties quadruple, meaning he refuses to eat even more... which then make him more desperately hungry... with flu season upon us this cannot continue!"

On the plane to Albany NY

Posterior Tongue Tie Revision, Take Two
At this point God sent some guidance in the form of financial provision.  Our health insurance alternative, Samaritan Ministries, assured us that any expenses incurred as we tried to help Liam would be covered 100% as part of our maternity bill.  This meant that if we could get to Albany, NY, the surgery & consultation itself would be completely covered by contributions from other believers around the US.  I checked my frequent flier miles and found that I had enough for a free round-trip ticket to NY!!  On September 11th, I strapped my 2 1/2 month old to my chest and we boarded his first flight.  5 hours to get there, and then we were in a taxi "to see that dentist guy!" as our driver put it.  Dr. Kotlow was old-school, but obviously familiar with kids and very supportive of breast-feeding.  His assessment of Liam was that his PTT needed further revision (since he uses a laser, bleeding isn't an issue like it is with scissors), and his comment when he saw the lip tie was "oh, that's huge."  So much for it not being an issue.  Half an hour later, it was all over, and I was once again being given instructions for after-care and being encouraged to try and nurse him.  God gave me a gift of hope in the taxi back to the airport, though: "back in the Albany airport post-op. Liam just nursed WITHOUT CLICKING in the taxi on the way here. He kept looking at me quizzically, like "something feels weird, Mom?" Praise the Lord for sucessful surgery-- now praying for healing!!"

The Weight of Being a Primary Care Provider
Dr. Kotlow (as well as all the folks on the FB tongue-tie support forum) urged me to pursue regular cranio-sacral therapy (CST) and chiropractic adjustments.  Liam had been adjusted since a week after birth, but I'd never heard of CST before.  Unfortunately, my jet lag-brain-fog meant that I switched his appointment times for OT and CST and he missed both, but I was able to find another therapist in the area who could see Liam the following day (Dr. Kotlow encourages being seen within 48 hours of the surgery).  Dove Pettit was very gentle and easily related to Liam.  She could tell he was still quite "tied up" (scar tissue and muscle/tendon/ligaments still out of whack from being tied for so long) but was able to get him to relax a bit.  By now our little guy was not only resistant to nursing; he also screamed when anything came near his mouth- bottle, medicine dropper, breast. He HATED the stretches I had to do to keep the surgical sites from healing shut (since there were no stitches), and I hated doing them. However, if I didn't do them, I knew I could be back in Albany in another month to do it all over again, back at square one.  Late on Sept 25th, I posted: "well, Eowyn's birthday was a wonderful little mental break... now I'm back to the overwhelming information overload that I must wade through to try and make sure Liam gets all the help he needs... please please pray for me. I am beyond trying to keep my head above water... more like looking for a longer snorkel. Thank you all for all your support and prayers!"

The next month and a half were quite the same:  Liam refusing to nurse except in his sleep or after violent protest, me pumping most of his feedings (and dumping probiotics into what I pumped), me trying to remember to do therapies with him at home (stretching of the frenulae, Beckman oral motor, brushing, joint compression, suck training and techniques to help him overcome his defensiveness and work on his sensory integration), taking Liam to OT, chiropractor & CST appointments, moments of dread and panic when he seemed to worsen (oh no! I've messed up!!) and tentative rejoicing on days when he did better.  Never before did the weight of maternal responsibility sit so heavily on me, and never again do I want to be The One responsible for so many things.  One night two weeks after his revision, Dr. Kotlow called to follow up, and was very concerned when I told him Liam had begun clicking and choking again.  He suspected that I wasn't doing the stretches hard enough or frequently enough.  My stomach sank to my toes-- had I somehow, by omission or commission, undone all the surgery?  Talk about hot guilt!  I videotaped myself stretching him and took pictures, and the doctor relented a bit, saying it looked like I was doing it all right.  I struggled with anger at God-- "I'm doing everything I can, can't you help me a little!?  Why is my son fighting to learn to do the things that other kids, kids with moms who don't even care, do naturally?  I'm trying so hard to be a GOOD mom-- do I deserve all this extra work?!"  Which shows you just how deep-dyed-in-the-wool-Pharisee my heart still tends to be, as if by working hard I could "earn" an easier child.  I'll have to do a separate post about what was helpful encouragement and what wasn't... but the Lord did provide strength, hope, and kindness every day.

His OT was amazed at his progress on the bottle post-surgery, though, saying he didn't seem like the same kid!  A big improvement was that now he took a bottle (AVENT slow-flow nipple) without protest, and his clicking was diminishing.  His reflux was also nearly eliminated-- the probiotics had greatly reduced it, and now the revision seemed to take care of the rest, though he still spits up on the greater side of normal.

The Final Hurdle
By two months post-revision, Liam hadn't changed much from 2 weeks post-revision.  His OT was stumped:  why, since he can suck well now, won't he?  For some reason he still fought breast-feeding like his life depended on it 95% of the time, if he was awake.  5% of the time he did fine, for no apparent reason, and when he nursed while asleep, he was a perfect little champ, though I wasn't able to rely on that every time, either.  He was far less refluxy but still harbored low-level congestion most of the time, and any time a cold or teething came along, feeding got even more difficult.  I refused to think about "next week" or even "next month--" I just tried to feed him this feeding, this day, though in my heart I knew I was holding out until 6 months, when I could try to introduce some solids and maybe get a little break from trying to force liquids into him.  (Though, solids may raise a whole new host of problems, his OT tells me.)  Patting, swaying, dancing, walking all sometimes worked to get him to nurse, but those were hard on my arm and back (by now he was 15-16 lbs).  He usually accepted a bottle but was pretty slow on them. Often he'd make up the missed calories at night, with me nursing him at every stirring.  I went in circles with myself, wondering if I should be "hard mama," not letting him have a bottle at all, but insisting that he nurse, or if it would be better to "let him lead," immediately offering the bottle if he refused the breast.  Neither really "worked."

I wondered --and maybe some of you wonder-- if I should just throw in the towel and resign myself to full-time pumping.  I didn't for several reasons:  partly because bottles weren't always a shoo-in either- he'd often fight them and choke on them too; partly because bottles are so much of a headache, especially when trying to combat yeast-- you have to constantly be sanitizing, refrigerating, warming, etc.  But most importantly because the sucking babies do on a bottle is different than the sucking they do at the breast, and correct sucking plays a huge role in how mouth & jaw structures develop.  The muscles and how they work affect bone shape, which is one reason dentists are strongly encouraging revision of ties (for a while the trend has been to leave them alone as much as possible).  Basically, we should try to correct anomalies instead of accomodate them as much as possible-- usually what is natural is the best way for more reasons than is immediately apparent.  (someday we will figure this out as a culture...)  So of course if and when it was a question of starvation, I did and still gladly do pump for my child!  But I also keep trying to get him to a place where he could do what babies should naturally do:  breast-feed.  As my friend Christa (the SLT) put it, we don't want to make a child run on a broken leg, but we do want to splint and set the leg, let it heal, and THEN teach him to run on it as much as he can.

Since getting teeth, he sucks his thumb far less!

At his last OT appointment (Oct. 30th), the therapist encouraged me to try a nipple shield.  I'd tried one before without any noticeable change, but had lost it.  The idea was that maybe Liam still associated the feeling of the breast with drowning/aspirating/chocking, and since a baby's #1 priority is "protect my airway!" there is no way he was going to choose eating over breathing.  He'd realized that he could handle a bottle by now, but still didn't know he could handle nursing, since he usually nursed in his sleep.  Maybe the nipple shield would help him bridge over to nursing while awake by providing a different, bottle-like, texture.  It would also give him more of a surface to latch onto-- his tongue/mouth muscles & coordination are still weaker than normal-- and would limit the flow of my let-down.  By now my oversupply had largely corrected itself, but the letdown is still quite powerful.

Well, that $6.50 (BabiesRUs price-matched the Amazon price) 2-pack seems to have done the trick.  At first we needed it every feeding, except at night sometimes, but now I haven't used it in 2 days.  I am still in shock.  After four months of struggle and tears, he... eats.  The other day he was hungry and he actually rooted to nurse.  Yes, I know, newborns do that.  But mine had forgotten how to do that.  I now have the luxury of forgetting to do his therapies occasionally.  While Liam's eating is still not perfect-- I often have to correct his latch, there's still a fair amount of sputtering and coughing, he prefers to be moving, he tires and has to be fed in spurts, he wakes up in the night frequently to nurse-- it's so far from what it was.  I am pretty sure he needs another CST session next week because he's been choking again-- this is a sign he's struggling to coordinate sucking & swallowing.  Probably the chiropractor will help too. 

So, in short, here are the things that helped us:  probiotics (reflux & digestion-- poor digestion is a side-effect of tongue tie, since digestive peristalsis starts in the tongue), massage & patting (burping-- since swallowed air is a big problem due to his less-than-perfect seal), baby yoga (when his crying got inconsolable), sleeping on his stomach (laryngomalacia & reflux), lavender essential oil (helped calm his breathing during a really scary diaphramatic spasm), cranio-sacral therapy (both Dove and Carol Ball of CranioSacral Center of the Carolinas), chiropractic care (his hard palate had to be adjusted), occupational therapy, assessment by an SLT, and most of all: diagnosis and revision by laser of his posterior tongue and lip ties.

May our trips and false starts down this path make someone else's journey easier!  And may you also see that God answers prayers.  Just as an example, here's a FB post from Sept 18th:  "Two prayer requests... both for Liam. One, that his passport would make it in time for our trip to Switzerland mid-October (by God's grace we overnighted/expedited it today, but the turn-around time is 2-3 weeks). Two, that God would fully re-release his tongue. His latch is deteriorating and I feel like we are back to square one. I really do not want to have to go back up to Albany, and I know God can release whatever He wants (some kids never require surgery at all). I am fighting discouragement and trying to trust the Lord with him and his little mouth. What a blessing that he's so CUTE!!! :)"  We DID get the passport, and we DIDN'T go back to Albany!!  Thank You, Lord!

EDIT:  another piece of the puzzle for us was a parasite cleanse.  I gave Liam Olive Leaf Extract to see if some of his rash would clear up, knowing that OLE is a gentle but effective antifungal, not knowing it was also a gentle but effective anti-parasitic.  Well my 5 month old passed a flatworm in his diaper.  This was before he ate any food or even crawled.  Overnight his chronic congestion cleared up.

Another puzzle piece was food allergies.  Liam is allergic to onion, nutmeg and potato-- all of which I regularly ate while nursing him.  This undoubtably caused the eczema-like rashes on his cheeks and all over his body (they became very obvious once he started solids; he's also allergic to peach peels and echinacea.), but probably also factored into his reflux & aversions to eating since he did react to it when I ate those foods.

Lastly, we incorporated sensory play intentionally to help him overcome the last residual bits of his sensory aversion (he hated water, including baths, sand and anything textured-- grass, beans, rice, etc.).  We did bean boxes, sand play, and water play-- a water table (gift for his 1st birthday) was an excellent therapy tool-- also used an electric toothbrush.

EDIT TWO:  I nursed Liam for 2 years 3 months.  For a good year after he accepted the breast his latch still "pinched" and was not totally comfortable-- I usually had indentations from his top two teeth after every feeding, especially on my right side.  However he LOVED nursing ("che-che") and I loved being able to nurture him like that, and was so thankful for the extra protection through toddler colds & illnesses, through potty training and tantruming.  My milk was still plentiful too; it wasn't until 18 months that his solid intake began to match his milk intake!  (I was also able to pump and give milk to mamas with many babies needing a little extra milk!)  The last six-ish months of our nursing journey Liam was able to understand what I meant about not biting down on Mommy, and would correct his latch when prompted.  Nursing was pain-free and so wonderful for both of us.  Our story had its ups & downs, and I would DEFINITELY characterize it as a SUCCESS.  William is a poster child for the benefits of breastfeeding; healthy, energetic, agile, extremely verbal, loving, well-bonded to both parents, smart, with beautiful teeth and facial bones.  PRAISE GOD!!