I’m Still Here: Woody’s Story

My dear readers, I’ve missed you!  It’s been a whole year since I have posted here.  For those of you not on Instagram, I feel like I owe you an apology.  I went dark on you. It certainly wasn’t my intention, and I hope we can pick back up where we left off; we have a lot of catching up to do.  I want to write this very personal blog post as a way to explain where I’ve been and what I’ve spent my time doing. The main purpose is, as always, to share my experiences and my findings in hopes that it will help at least one other person in this world.  I ask that you read this lengthy post without judgement, as I do not claim to have all the answers. I want to give you as many details as I feel comfortable sharing because, again, I hope to help others in a similar situation.

The bond between these two is so beautiful.  Annabel is the best big sister to Woody.

Since opening The Water Room last January, I’d been working my tail off trying to get my new business off the ground, and then Woody started having absence seizures.  He’d actually been having them for a few months, but because they started out so subtly, we didn’t recognize them.  His symptoms began as his eyes kind of rolling back when he was tired, either on the changing table, or in his highchair, or before nap time or bedtime.  It happened so infrequently that we wrote it off as Woody fighting off falling asleep. Gradually it increased. One day in April, he had four episodes in a row (unprecedented) in front of our acupuncturist, and she said we should take him to a neurologist immediately.  We started googling, found some really scary stuff, but we tried to stay positive. Woody’s pediatrician got us a referral to the best hospital in South Carolina, but no one could see Woody until NOVEMBER (it was April). A family friend graciously pulled some strings and got us in to see a pediatric neurologist in May, which still felt like a lifetime of waiting.  (As a side note, this makes me furious. I do not claim to have the answers to fix our broken medical system, but this is not ok. It seems that unless your child is dying in your arms, no one will see you or talk to you. What about the people who have no strings to pull??? It’s just not right. I do not blame the doctors so much as the system in which they must work.)

Woody, mid-seizure, April 2019


Our first visit to a neurologist, May 2019

When the pediatric neurologist evaluated Woody, he kept saying how “benign” his condition seemed, but he ordered a 2 hour EEG (to read his brainwaves) to be sure.  Even for Woody, a trooper, who is used to being poked with acupuncture needles, Rolfing treatments that can leave bruises, chiropractic, physical therapy, leg braces, (all to treat his toe-walking condition), this was a traumatic experience.  They restrained him so that he could not move on the hospital bed, and proceeded to apply over 20 electrodes to his head with glue and a cold air gun. I could tell he was trying hard to be brave, but he cried the entire time. He was scared, and he was crying “Mama” over and over.  It took everything I had to not just weep in front of him, but he needed us to be strong for him. He finally fell asleep (they wanted to read his brainwaves awake, drowsy, and asleep), which was a miracle in my eyes. I went home and shook and cried and prayed for a solid 30 minutes, wondering how parents of chronically ill children can even stand up each morning.  If the road ahead wasn’t to be an easy one, would I be strong enough?

Woody’s first EEG, May 2019

Three weeks went by before we got the results, which were left on my voicemail by a nurse who did not know us.  “The neurologist has diagnosed Woody with Primary Generalized Epilepsy, and he has called in a prescription for Keppra to your pharmacy”.  Um, excuse me? After researching the medication, I called the nurse back and informed her that I would not be filling any prescriptions until we were able to speak with Woody’s neurologist, in person, to discuss the results of the EEG as well as our treatment options.  They told us there was an appointment available in JANUARY (it was May).  As you can imagine, my head almost exploded. I didn’t want to keep “pulling strings”, because I don’t think it’s fair.  We didn’t take no for an answer, and we finally got in with the neurologist a few weeks later. I came prepared.  I had talked to other moms with children in a similar boat; I talked to my trusted naturopath of 9 years; I talked to other doctors who had children with epilepsy; I researched medications; I researched the Ketogenic diet, which doctors used to control epilepsy before medications to treat it were invented, and I researched CBD Oil, among many other things.  (If you haven’t watched the 60 Minutes piece on CBD, called WEED, or watched the documentary The Magic Pill, I highly recommend you do.)  The neurologist was somewhat receptive, but still advised we try medication if Keto didn’t work within 3 short weeks.  He explained that seizures beget seizures, which is true;  It’s like a campfire that you need to smother before it becomes a forest fire.  I could already see that Woody’s seizures were increasing in frequency and duration.  We were in a race against time, and I was terrified we would have to medicate him. While I am not against medication in all cases, I do believe in trying to find the root of the illness first, and trying to resolve the issue with functional medicine, rather than controlling only the symptoms with medication.  The neurologist also explained Woody’s condition as “genetic”, but would not prescribe any genetic testing, no MRI, no other lab work, nothing.  “Show us the gene. Let’s get some genetic counseling, we will pay anything,” we said. We just wanted to better understand, we wanted to learn, but we were shut down.

Woody’s 72-hour ambulatory EEG, June 2019.

A couple of weeks later, Woody vomited a tiny bit while sleeping.  The neurologist said it was possible that Woody had had a grand mal seizure in his sleep, (we now know this was not the case) and ordered another EEG – but this time it would be a 72-hour ambulatory (at-home) test.  We went back to the hospital to have the 25+ electrodes glued back on his head, which was traumatic enough, but we had no idea how hard the next few days would be. Woody had to wear the cap on his head nonstop, and the wires on his head connected to an EEG “recorder” in a backpack.  The backpack weighed about ten pounds, so one of us would have to follow him around vigilantly with the backpack, like a dog on a leash. He was miserable. He could not run (try telling a 2.5 year old boy not to run). He could not bathe, swim, or sweat (it was the dead of summer). If even one electrode popped off his head, the whole test would be null and void, and we would have to do it all over again.  Woody had to sleep with the cap, and the wires, and the backpack. I was terrified he would pop an electrode at best, or be strangled by the wires in his sleep at worst, so he slept between Richard and me in our bed. I stayed up three nights in a row untangling wires while Woody tried to sleep. While I lay awake, crying and praying, all I could think, was “what if?” Would his seizures continue to increase and become grand mal?  Would they become so severe that he would end up in a comatose state? Would we lose him? Or, if he did live, would he have a normal life? Would he be able to drive? Have a girlfriend? Play sports? Would he be able to get through school and be able to provide for himself as an adult? I took a week off from running the show at The Water Room, and my parents came to visit to help during the ambulatory EEG. We cooked Ketogenic foods day and night, and Woody wouldn’t eat a thing.  He has severe texture and food aversions, and mealtime is usually traumatic for him. He wouldn’t even eat chicken fingers anymore. He was down to applesauce and crackers. Being a clean-eating omnivore who loves to cook, and the mother of another child who is an adventurous eater, this greatly concerned me. I knew it all had to be connected somehow.

An attempt to get this boy interested in eating good food

The hospital proceeded to “lose” Woody’s 72-hour EEG results.  You read that right: they couldn’t find the results, and we would have to do it all over again.  We had to press pause. There was only so much I, or he, or my husband, or my other child could handle.  We were ready to go down a different path, so we continued to research, and started employing various healing modalities and holistic protocols (more on that later).  When the hospital called two months later, a nurse who didn’t know us relayed the information once again. “The neurologist says that Woody’s most recent results look the same as the 2 hour out-patient EEG, and he has prescribed Keppra.”  How results from a 3-day EEG can look identical to a 2-hour EEG, I don’t know, but I was DONE.

I am a big believer in integrated medicine, which takes the best from both worlds of western medicine and holistic medicine.  Western medicine can’t do it all on its own, and neither can holistic medicine, but I believe that, together, they are unbeatable.  However, in this case, western medicine wasn’t holding up its end of the bargain. It was taking forever; it was inefficient; it was expensive; it was not collaborative; the communication was non-existent; and we were losing time, all while our baby’s seizures were getting worse.  If one of us needs emergency surgery, I know where to go, but in the meantime, I have decided to take the matter of my child’s health into my own hands. I am not a doctor, but I will go to the ends of the earth to protect and heal my baby. I have realized that it is my responsibility as his parent to be his advocate.  I cannot just rely on WebMd or the first doctor we meet. It is up to me to do the research and find him the best practitioners for his special needs. A mother’s intuition is incredibly powerful, and mine had been begging me to pay better attention to it for a long time. I finally listened. I knew that Woody’s extremely picky eating, his seizures, his toe walking, all pointed to a neuro-immune, or neuro-developmental disorder of some kind.

Woody at the chiropractor, getting his “massage”

At first glance, Woody is beautifully “normal”.  He is smart, social, curious, funny and kind. But, what I have learned about these types of neurological disorders is that no two cases are alike.  Woody’s issues are mild compared to other children I know who are afflicted, and I think we caught it early enough that he will have a normal life.  Luckily, I have also learned that this is a condition that can usually be improved or even eliminated with a very specific diet, supplements, and healthy lifestyle choices.  Medication is often not necessary. You see, the one thing that most children like Woody have in common is unfortunate epigenetics, or “dirty genes“.  When you combine certain genes or gene mutations with exposure to environmental toxicants, these genes are unlocked and chronic health conditions can occur.  So, I thought, wait, what if I eliminate the toxins? That is something I’m fairly well-versed in – I’m no expert, but I’m at least an amateur, and I’m passionate about it, and I’m committed to learning more.  I’ve been working to keep my family safe since before I even had one, right? I mean, that’s how this blog was conceived in the first place (no pun intended).

Woody with our beloved acupuncturist of 8 years

While we were waiting for the results of Woody’s 72-hour ambulatory EEG back in July,  part of taking matters into my own hands included beginning a Nutritional Balancing protocol for him.  A Hair Tissue Mineral Analysis revealed that Woody was chock full of heavy metals. Lead. Aluminum. Mercury.  Scary. The theory behind this unconventional protocol is that as long as the tissues in the body are full of heavy metals, essential minerals, vitamins, and other nutrients cannot “get in”, no matter how good one’s diet is, and then health begins to decline.  A Nutritional Balancing protocol entails simultaneously detoxifying the body with some supplements, while remineralizing it with others, all while eating a clean, organic, individually prescribed diet (in Woody’s case, a high-fat, low-sugar version of Paleo, minus Excitotoxins).  We have also been administering Charlotte’s Web CBD Oil since May, as it has an impressive track record in treating epilepsy and other neuro-developmental disorders.

Blueberry picking, July 2019. The first whole fruit or vegetable Woody ate in almost a year. I cried.

We also found an incredible new neurologist in July.  A brilliant, compassionate, pragmatic, open-minded man who will stop at nothing to help us heal our son.  He ordered about a dozen labs: genetic testing, gut bacteria testing, mitochondria level testing, you name it, but he also said that he was open to prescribing medication if he concluded that it was necessary.  We spoke the same language; it literally brought tears to my eyes. I felt heard, and I finally knew Woody was in the best hands.

Woody, September 2019, the week his seizures dramatically decreased.

The genetic testing and all the labs took 1-2 months to be processed, but in the meantime we stuck to Woody’s Nutritional Balancing supplements, an organic, excitotoxin-free Paleo diet, and the CBD oil.  I made sure he got a lot of sleep, (kids who have seizures need more than most children) that he got outside to play every day, and I limited his TV time and other sources of EMF exposure. We already had a whole house water filtration system and a whole house air filtration system; I was really trying to cover all my bases.  Woody’s seizures began to decrease a bit (we keep a log at home, and his teachers keep a log at school). They went from 25 per day to about 15, but trust me, watching your child have 15 seizures per day is still absolutely excruciating. Then, during the second week of September, while on “hurrication” (in Charleston, evacuating due to a hurricane has become an annual family trip of sorts) Richard asked me if I had noticed any seizures, because he had not…I couldn’t believe it; none of us had noticed a seizure all week.  I thought maybe it was the cooler air, or the different house, but we returned home, and Woody’s seizures were still basically non-existent. Our holistic protocol was working. I have never been more humbled or more grateful for anything in my entire life. Woody has been about 95% seizure-free since September. We have since done another Hair Tissue Mineral Analysis, and it indicated that Woody’s body was dumping heavy metals. We are not out of the woods yet; we have a long road ahead, but we can finally enjoy our child again, and our child can enjoy his life.

We are so lucky that Woody’s school is so supportive. He loves it there.

A little over a month ago, we finally received every last genetic test and other piece of lab work back from Woody’s new neurologist, and we had an appointment with him to discuss everything.  To be honest, it wasn’t all great news, but it did verify many of my assumptions about Woody’s health and his future, which made me feel a little less crazy and anxious. For one, Woody has a double MTHFR gene mutation; he cannot detoxify, metabolize, methylate, – whatever term you want to use – like a “normal” person.  He will have to be mindful of his diet, environment, and lifestyle for the rest of his life. We found out all kinds of other things about his genetic makeup, and how his body is operating, but for now, that is all I feel comfortable sharing. I struggle with putting my child’s medical information out there on the interwebs, but I hope that Woody will one day grow to understand that sharing our own stories can help others, and I hope he will share more on his own terms.  I will also always tell him that so many people – those who knew him and many who didn’t – sent him good vibes and energy, kept him in their thoughts, and lifted him up in prayer. I’ve always believed in all of that, but I believe even more now. This experience brought me to my knees, literally. I was on the ground praying every single night next to Woody’s crib while he slept. I begged God to show me the way, and with grace, I was given that opportunity.

Woody loves seeing Annabel at school. This was taken after her Snowflake Dance performance, December 2019.

Many of you are probably wondering how I, a “clean living expert”, wound up with a child with so many toxins in his system.  This is where it gets tricky. First, as I stated before, Woody has a double MTHFR gene mutation. He never had a fighting chance when it came to metabolizing environmental toxicants.  Second, our world is just so polluted. The air we breathe, the water we drink, the plants and animals we eat; it’s all contaminated, whether it be with glyphosate, heavy metals, or other industrial pollutants.  I did a 21-day cleanse before each of my pregnancies, but I regret not going deeper. I wish I had known about heavy metal chelation, I wish I had known more about MTHFR, I wish I had gotten myself tested for that gene, I wish I had known about Nutritional Balancing.  I wish I had detoxed my own body further so that I didn’t pass on a toxic load to my unborn children. Lastly – and this is the hardest thing I have ever said or typed, and I ask that you keep an open mind – I wish I had known that the insert of virtually every vaccine states that one of the possible side effects is seizures.  I wish I had known that when aluminum is ingested, the body is able to detox about 95% of it, but when aluminum is injected (it is adjuvant in many vaccines) the body retains about 95% of it, and that it can pass the blood-brain barrier.  I wish I had known that formaldehyde – an ingredient I won’t even tolerate in my nail polish – is present in many vaccines.  I don’t care if they “only” contain .5mcg; any amount, when being injected into a baby, is unacceptable to me. I had done so much research on food, air filters, water filters, building materials, makeup, shampoo, diaper cream, cleaning products, cribs, mattresses, you name it, but I didn’t research the most important thing of all that goes into my children’s bodies.  I look back and I don’t know how I could have been so blind when I pride myself on questioning everything. We’ve always vaccinated both of our children on a split, or delayed schedule because something in me didn’t feel comfortable injecting them with multiple viruses (whether live, or inactive) in one sitting. That prudence was enough to protect my daughter’s health, but it did not serve my son, and I will always feel sick about my lack of due diligence.

My two super-fans

Woody is medically fragile, and his poor little body cannot handle much.  He has been granted a medical exemption from any further vaccinations, and I will have to monitor every piece of food that passes through his lips for the rest of his childhood.  I will have to worry about everything from the fumes of a new car to what kind of mattress he sleeps on in his college dorm room. I am well aware that vaccination has become a very controversial, polarizing topic, and I am honestly terrified that I will be ostracized, mocked, ridiculed and trolled, and I am even more afraid of Woody having to endure that kind of treatment.  I want no part of this heavy, uphill battle, but it has landed on my doorstep, and I have to be brave enough to answer the door. Please don’t call me an anti-vaxxer. It’s an oversimplified, derogatory term that was created to bully and shame people. Most of the people who have this scarlet letter branded on them aren’t dumb hippies living in communes who are just refusing to conform.  Most of them are people like me: parents who have been through Hell and learned from it. And the ones who are brave enough to speak out about it aren’t doing so to hear themselves talk or to stir up trouble. They are doing it because they don’t want another child or parent to have to live through what they have experienced. I have no judgement toward anyone else’s decisions on whether they choose to vaccinate their children, or not.  I never claim to have all the answers, but I also do not post anything on this blog unless I feel like I’ve researched a topic enough to feel confident in my findings and that is the reason why you haven’t heard from me until now. I would never publish a blog post until I had my facts straight, and it took me a year, but I finally feel confident in my conclusions. Bare Beauty will not become a blog about vaccines. I want to get back to the light, fluffy stuff, with a side of health and wellness; I have enough heaviness in my day to day life.  However, if you are interested in learning more, I highly recommend you follow Robert F Kennedy Jr. and the work he does for the Children’s Health Defense.  RFK Jr. is one of the attorneys responsible for taking down (or at least he is beginning to take down) Monsanto, and he has taken on this issue with such bravery and grace.  Another great resource I’ve found valuable is Physicians for Informed Consent; there are more MD’s questioning the safety and efficacy of vaccines than ever before.

We started brain mapping (neurofeedback) last week, and Woody was a pro.

Thank you for taking the time to read this lengthy post.  It was very difficult for me to write something that leaves me feeling so vulnerable and exposed.  I hope it answers some questions, and I sincerely hope it helps someone else. I also want to express my gratitude once again to all of you who have kept us in your thoughts.  So many of you have emailed me and DM’d me to check on Woody, and it truly kept me going through the very darkest time in my life. Thank you.

My hero.