Monthly Archives: March 2016

Healing My Kiddo – Lessons from the Field

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  1. You are not alone. While traveling for work a few months ago, I sat next to a mom and her 11 year old daughter. They were headed to a children’s hospital for some experimental surgery, hopeful that it would help her daughter walk as she was losing more and more movement with each passing week. Over the course of the hour and a half flight, we discussed her daughter’s history, medical mysteries, the challenges, the heartaches, the successes. I shared some of my own with my daughter, and what had worked for us. We exchanged numbers and she texted me shortly after parting ways that there had been a mix-up and they were going to have to wait for the next hotel shuttle. I immediately offered come back to the airport and give them a ride to the hotel in my rental. She insisted they would be fine, but thanked me profusely for my unexpected kindness.
    I have met a lot of parents via social media and some in real life that are on a similar journey of healing their children, and I have found that there is almost always an instant, unspoken bond between us. We are rarely at the same places in our journeys and may have strong differing opinions on certain topics, but I will still vigilantly assist and defend this virtual stranger simply because I know how much it means to them. It is strange and amazing, like 2 veterans who have witnessed the same horrors that others simply cannot relate to or understand. Many of us have little to offer in the way of assistance except to share our collective wisdom and support in the form of our words, so that’s what we do. I would not wish our experiences on my worst enemy but I have found an unexpected comfort in the knowledge that at any given moment, thousands of other parents and caretakers are out there fighting alongside me in this epic battle.
  2. Take care of yourself. The truth is that I’m not a person who handles adversity well, I’m more of a ‘fixer’. If there is a problem, I don’t tolerate it – I ‘fix’ it. Perhaps that’s why software engineering is such a good vocational fit for me. I remember at one point early on my husband said to me, “Tracy, you cannot debug an infant the way you debug a computer program.” (He was partially correct.)
    At any rate, I must have had at least a dozen or so different people say these exact words to me, “Remember to take care of yourself”. I always nodded enthusiastically, but internally I thought to myself, “Oh, I will – just as soon as I get my kid’s health problems worked out!” But that’s not how this process works, it’s a journey. You will cross the finish line a thousand times and never at all. In the words of Amy Yasko – it’s a marathon, not a sprint and you will make it farther if you recognize and honor your needs along the way.
    Don’t get me wrong, there have been periods during my daughter’s life that did not afford any ‘me time’, when we were simply doing everything we could to survive until the next day. But it does get easier, you will find a rhythm amid the chaos and those are the times when you need to fill up your own bucket. I used to think I was being selfish when I did so; how can I possibly go work out or sit and meditate when my child is physically hurting herself?! But that’s just it, I have more patience and tolerance for the terrorizing realities if I take some time to care for me, and I find it easier to recognize and appreciate those precious, happy moments. (Not to mention, I have had some of my greatest ‘AHA!’ moments regarding my daughter’s conditions while meditating or praying.)
  3. Every child is unique. As a parent, when you have those breakthrough moments with a treatment, I think it’s natural to want to scream from the mountaintops that you’ve ‘finally found the answer!’ What I have learned, is that the answers for my child are not necessarily the answers for other children. There are countless variables that effect how and why a child (or person) arrived at this exact point in their health. (I believe ‘Bio-Individuality’ is the current buzz word of choice.) It is a perfect storm that you could not possibly duplicate, even if you tried. I’m not even certain that our own ‘breakthrough’ treatments would have been as profound, had they not occurred after the other treatments we had already implemented and at the time we tried them.
    I think it is our instinct to want to help every single parent and heal every child we encounter, but it’s important to remember that everyone is at a different place in their journey and we are all dealing with our own unique struggles at any given time. I try to remind myself that even a gentle and subtle suggestion might plant a seed that will blossom when the time is right.
  4. Keep a log. If there was one single piece of clinical advice I could give parents, it would be to keep a log for their child (and even themselves). Our environmental and food allergy testing has come a long way, but my guess is that it’s still only in the 70-80% range of accuracy – at best. And there are no labs to account for chemical sensitivies, occurring in individuals with metabolic or detoxification shortcomings. The single best way to determine one’s tolerance to anything is through trial and error. (Dave Asprey calls it ‘Bio Hacking’ oneself in his book “The Bulletproof Diet”.) Our daughter’s log consists of a spreadsheet that I’ve modified as she’s grown and currently accounts for her daily food, supplements, and any behavioral or physical anomalies (extreme hyperactivity, rashes, extreme defiance, fussiness, sleep troubles, diarrhea/constipation, etc.)
    I don’t know how we could possibly have unraveled some of the medical mysteries about my daughter without that log. For example, we discovered she cannot tolerate purines. Purines are a natural food chemical found in large amounts in certain foods such as liver and cauliflower. Her symptoms of purine intolerance are largely behavioral in nature, which makes it particularly difficult to identify vs a consistent physical symptom such as a rash or stomach upset.
    I would wager to guess that virtually everyone is battling with at least one unknown environmental, food, or chemical sensitivity – contributing any number of symptoms.
  5. Ask for help. Some of us are excellent at recognizing and communicating when we are in need of assistance, I am not one of those individuals. To be honest, I never really needed much help before – not like this anyway.
    I inadvertently stumbled onto a mother’s blog early on in this journey (one of many). She had a young, teenage daughter who suffered with severe ASD, and the child often became physically violent with her. Her husband worked long hours, and she was responsible for caring for her daughter along with their other children. Aside from sharing her own story via her blog, she participated heavily in a grass-roots community effort to help other parents in similar situations navigate the state and health insurance paperwork and get the medical and financial assistance they so desperately needed. The last post on her blog was written by a dear friend, asking readers for support to help the family in their time of greatest need. She went onto explain that the mother was in prison after trying to take her own life and that of her daughter’s by lighting a charcoal grill in an enclosed vehicle with the 2 of them. Both were found, survived, and treated for smoke inhalation.
    I remember sobbing for weeks, every time I thought of that poor woman and her daughter. Even now, I cannot help but tear up. Caring for a seriously ill child will take EVERYTHING out of you. The stress, the sleep deprivation, and the trauma are enough to turn even the most hardened individuals inside out. Know your limits, and honor them. When it gets to be too much, screw your pride and ask anyone and everyone for relief. I found that the help was rarely where I expected it to be, but it was there nonetheless.

With Peace & Love,
~Tracy

Dear National Institute of Health,

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Not long before I conceived my now 2 year old daughter, a dear friend of mine told me a story about her 16 year old, non-verbal, ASD goddaughter. She said that prior to receiving her 2 year round of vaccinations, she was a healthy, happy little girl who could sing nursery rhymes in both English and Czech (her parents are both Czechoslovakian). In fact, she said they had videos of the little girl singing that had long since been discarded because they were a sad reminder of what used to be. Within a few weeks of her 2 year vaccines, all that changed as she slowly became socially despondent, developmentally delayed and lost all speech.

I vividly remember my corresponding internal monologue, “Oh, that’s so sad – those poor parents and that poor little girl. Maybe it was the vaccines, but more likely it was an inevitable event that they mistakenly associated with the vaccines”. As the new parent of a vaccine injured child, my perspective on the issue has changed somewhat.

According to the CDC, overall national vaccine rates are high but misleadingly conceal pockets of ‘non-vaccinating communities’. In addition, recent statistics show that 40% of U.S. parents of young children have delayed or denied at least one vaccine on the CDC recommended schedule. Who are these parents? They are individuals who largely believe in the notion of herd immunity and support vaccinations as a mechanism for infectious disease prevention. However, they may find themselves questioning the necessity of each one of our ever-growing number of vaccines and boosters, and wondering, “Is more always better?” I don’t anticipate that the vaccine debate will subside, or that the vaccination rates will improve anytime soon. On the contrary, I suspect that things will become much more heated as the CDC’s mandatory schedule grows, more parents like myself share their experience and concern, and more U.S. parents continue to opt out of vaccinations.

Most vaccines developed today include just small components of germs, such as their proteins, rather than the entire virus or bacteria. Consequently, the vaccinations must also include an adjuvant to stimulate the immune system and elicit the necessary response. Adjuvants help activate the immune system to ensure the body produces an immune response strong enough to protect the patient from the germ he or she is being vaccinated against. Currently, aluminum is the adjuvant of choice for nearly all US vaccines. According to the CDC’s current recommended vaccination schedule, children will receive 16 doses of aluminum adjuvant before the age of 2. Incidentally, aluminum is also among the adjuvants used to deliberately evoke an autoimmune/inflammatory response in lab animals when necessary for testing purposes; a concept commonly known as ASIA (Autoimmune/inflammatory Syndrome Induced by Adjuvants).

Does our current vaccination schedule have the potential to ‘overstimulate’ our immune system, and induce allergies and autoimmune conditions? That is the question you should be closely examining, given the current (growing) statistics.

  • According to the American Academy of Allergy, Asthma & Immunology, sensitization rates to one or more common allergens among school aged children are currently approaching 40%-50% worldwide. In addition, one in five people in the U.S. currently have allergy or asthma symptoms and 55% of Americans test positive to one or more allergens.
  • As of 2011, over 40% of American men and women are expected to develop cancer within their lifetime. (Many forms of cancer are autoimmune in origin.)
  • The American Autoimmune Related Diseases Association (AARDA) estimates that 20% of Americans (63 million people) are affected by autoimmune disease.
  • The percentage of children with an ADHD diagnosis continues to increase each year, from 7.8% in 2003 to 9.5% in 2007 and to 11.0% in 2011. (ADHD is suspected as an autoimmune condition.)
  • As of 2010, 1 in 10 adults has diabetes and that figure is expected to double or triple in the next 35 years. (Diabetes is considered an autoimmune disease.)
  • The number of children with Autism has more than doubled since 2000, to 1 in every 68 children. (Autism is suspected as an autoimmune condition.)

Why do so many of these emerging epidemic conditions share the origins of a dysfunctional immune system? We are the most heavily vaccinated, developed country in the world and also among the sickest when it comes to non-communicable, chronic illnesses. It would seem ignorant and irresponsible to not at least consider that the single most influential and widespread medical procedure affecting our immune system might be playing a role. But that is the reality of our current situation, there are no significant epidemiological studies examining the potential association between frequency and volume of vaccinations, and immune dysfunction.

Aside from Autism, I am concerned with vaccines contributing to my child’s propensity for developing allergies, Celiac disease (also an autoimmune disorder), ADHD, Diabetes, etc. and I want to know the statistical likelihood for such an event. In fact, as a parent – I have a right to know the risk involved in choosing to vaccinate my child with the current recommended schedule. This is not a tall order. Epidemiological studies to substantiate the safety of a drug or procedure are commonplace, and there are plenty of non-vaccinated children to serve as controls in such a study.

Furthermore, what is the acceptance criteria for additional vaccines and boosters being introduced into the current schedule? Typically, studies to establish safety will test the effects of only the one isolated vaccine in question, but that is not representative of how vaccinations are delivered according to the current schedule. It is imperative that each additional vaccine be studied as part of the total administered, so that any potential cumulative and aggregate effects can be properly evaluated. Researchers have observed the immune-stimulating effect that aluminum has on the immune system, but they do not fully understand the mechanism behind how it produces the response. How then are they able to determine how much adjuvant might be ‘too much’, as we continue to pile more vaccinations onto the schedule, year after year.

If you want parents to adhere to the current recommended vaccination schedule, then do your due diligence so we have peace of mind. Until then, you have only yourselves to blame for the inevitable dissidence.

In Truth,
-Another Anxious Vaxxer