Where to start

So.  Your child has received a new diagnosis and you are trying to figure out what that means.  For many of us, that means that we simply get more questions and no answers. A diagnosis can bring heartache, fear, isolation, and ignorance.  

But I’m here to give you a starting point.  

First.  Breathe.  Helping your child is a marathon, not a sprint.  You need to take care of yourself. I know how crazy that sounds when you are drowning, but find the little habits and small ways to find space.  I meditate on the subway, eat really good food and even shower some days!

It’s really so hard.  I know that caring for yourself just feels like yet another task in the never ending task list, but I promise it will be worth it.  

So where do you start?  

Diet

Diet is always key.  There is so much research linking digestive health to neurological health.  

Your child is never going to do well neurologically if they are eating lots of sugar and gluten.  Yeast takes over our senses and makes us crave more carbohydrates, sugar and dairy. Those foods do not help nourish the brain, they feed candida and dysbiosis while damaging the gut lining and increasing inflammation not only in the gut but the entire body.  There are so many great brain healing diets out there, but every single one is focused on eliminating inflammation and (as far as I know) almost all of them insist that you cut out gluten, dairy and sugar.  That is the place to start.

With my patients I recommend that they simply focus on adding more good foods.  Add high quality fats. Add more nuts and seeds as snacks. Add a side of avocado… to everything. Cook with ghee or lard from grass fed animals.   Increase greens at meals. Increase the good as you phase out the bad. If you want to go cold turkey - even better. But the phase out works. And sanity is key.

Once you start eating more healthy fats and your diet is full of good whole foods, your energy and digestion will improve.  Often inflammation (manifesting as eczema or arthritis, brain fog or IBS) will reduce or disappear and energy and brain function will improve.  Diets can continually be refined, but again, find what works for you. Also consider checking out viome - they are my favorite GI testing company.  They will tell you exactly what to eat and why based on the bacterial population in your gut.  

Glyphosate (found in RoundUp pesticides) has been shown to be incredibly dangerous.  It is used commercially and also used in homes around America. This pesticide can significantly impact gut health and mitochondrial function.  Research being done by Stephanie Seneff (of MIT) is elucidating the many ways that glyphosate affects the body and brain and it’s truly terrifying.  I highly recommend that you do your best to avoid this toxin and eat local organic foods as much as possible.  

Detox

Next step is to look into heavy metals.  Janet Hull has a good hair test and I think it’s only $180.  Your doctor can likely run some tests, but they usually don’t run nearly as many metals as necessary.  I’ve been pretty obsessive about Remy eating clean food since before he was born, yet he tested high on multiple heavy metals including antimony… which was used in a chemotherapy I took 16 years before pregnancy to cure leishmaniasis.  Heavy metals impede development and cause long term damage and disruption of the nervous system. There are safe and easy ways to detox, but it’s best to have a baseline and to work with an experienced practitioner.  Some of the things Remy and I use to detox are: chlorella, ozone, foot baths, French green clay, various zeolite formulas, glutathione, and infrared sauna (me).  Depending on the metals you may also want to look into cilantro or other specific supplements. The tricky things with detoxification is that you can remove heavy metals from one part of the body only to have them shift to another part, so you want to make sure they are properly bound and that you are clearing them (through liver, kidneys, bowels or skin) effectively.  

You should also look into the EMF (electromagnetic field) levels in your home.  Cell phones, smart meters, laptops, iPads and other products all give off EMF and it can have dramatic impacts on our health.  According to Dr. Mercola, “Risk factors for electromagnetic hypersensitivity include spinal cord damage, whiplash, brain damage, concussion, chemical and heavy metal toxicity, impaired immune function and bacterial or parasitic infections such as Lyme”  Children are also particularly sensitive to EMFs from technology.  If you think about it from a basic level, we know that cells communicate electrically, and the heart and the brain use electrical communication extensively (EEGs and EKGs measure the electrical activity of the brain and heart respectively) having other electrical fields around those organs change how they function, and potentially how they develop.  New research is pretty frightening and links EMF exposure to autism, mitochondrial dysfunction and even cancer. While it may seem like a conspiracy theory it’s actually quite logical. Personally, I turn my phone on airplane mode every night, I have a faraday box around my router and an EMF protective case on my phone (which I rarely use if it’s not on speaker).  I hope to buy some of the EMF filters discussed in Dr. Mercola's article above and look forward to his upcoming book on the topic.

Movement

The brain develops from the bottom up.  So the midbrain, the brainstem, the pons and limbic system - this is where many children get stuck in development.  This is where Remy is stuck. Movement has evolved in a specific pattern in order to support that development. First children do their adorable “army crawl” (or just “crawl”) then they crawl on their hands and knees (“creep”) then they move towards walking.  The alternating bilateral movement, the specific actions involved in each step - they are all used to help strengthen neuro-pathways in the brain to help move forward for further and more complex neurological development. These movements also help children integrate reflexes, which is an important process for neurological development.  

Many children with developmental disorders do not crawl or creep properly.  Remy did a funky one legged army crawl but his creeping is perfect. The army crawl shows that his midbrain is not functioning optimally though, and that was actually confirmed by his MRI.  Get your kid crawling. Get them creeping. It’s very important for brain health.

If your child or loved one with a neurological disorder is older and not interested in crawling around.  Have them stand in place and lift their right leg and left arm, then left leg and right arm. Over. And over.  The key to creating new neuro-pathways is intensity and frequency.  Tai Chi, Yoga and Brain Gym are all great tools as well.

Sensory stimulation is also important.  Check your child for clues. Remy always wants more; tighter hugs, more noise, higher swinging.  However, he was sensory avoidant with his hands. I got a water table and after some time, he is finally using his hands more functionally and not shying away from things.  I try and do lots of massage and wrestling with him because it helps him know where his body is. Plus it’s fun for both of us.

Smells help regulate the limbic system.  Which makes sense if you think about it. The limbic brain is all about emotions and smells are so deeply tied to emotional responses.  One thing you often see with elderly people with dementia or Alzheimer’s is that they lose their sense of smell. One of the tools I learned from the family hope center was to have Remy smell three scents 10 times a day.  So I have an assortment of essential oils that I pick three for the morning.  Before breakfast I have him smell each of them, then after breakfast and then once during the morning.  Same for lunch and dinner with different sets. It’s super easy and really effective. I do it with him, because - who couldn’t use some emotional regulation support?!

Oxygen

Oxygen is a little more advanced.  It’s gonna help with detoxification and healing.  Typically it’s best to work with an experienced provider who can make recommendations that are best for you.  There are ways to rent chambers or buy them for home use, which may actually be cheaper in the long run. Having a chamber at home may also help for those with mobility challenges.  With our hectic therapy schedules on top of everyday life, treatments at home are gold… but I haven’t made the leap yet. Remy does 20 hyperbaric sessions twice a year in conjunction with other neurofeedback techniques and it’s been great.  

I’m currently spending a lot of my time studying Photobiomodulation, which “is defined as the utilization of non-ionizing electromagnetic energy to trigger photochemical changes within cellular structures that are receptive to photons” (VieLight.com).  I just bought a VieLight 810 and am trying it (for short periods on Remy slowing increasing based on how he’s responding).  I also just ordered a Joovv red light panel that I’m hoping with help Remy with mitochondrial function and energy.  I’m sure I’ll get into this more later, but it’s pretty interesting stuff and lots of research supports light therapy for brain health so it may be an easy and safe way to help your children inch forward.  

Supplements

Last we discuss supplements.  Now this is a tricky section because it needs to be customized for each person, but I will go over the main supplements that Remy and I take to optimize our health and our brains.  

First things first.  Lots of oil. We both have lots of ghee, MCT oil (I like Bulletproof and their entire line) and an omega blend (currently using BodyBio is which has a good omega 6:3 ratio and you avoid the risk of rancid or toxic fish oil).  Oils are incredible for the brain and they help with neuro-inflammation as well as neurological function. Remy is also on phospholipid Choline (by BodyBio) to help with detoxification, cell membrane integrity and permeability as well as overall brain function (this supplement was a game changer for Remy).  

Remy also takes the designs for health Folinic Acid supplement, CoQ10 and PQQ for brain function and mitochondrial support and CBD to help with his sleep, to help with neurogenesis and to reduce his seizures (he takes Remy's Revenge which I created for him and other people struggling with neurological challenges - it’s incredibly high quality cbd combined with Chinese herbs to potentiate the actions).  I take the Rest and Relax CBD by Radical Roots.  We take chlorella, glutathione and zeolite supplements for detoxification.  And we both use Bioptomizers probiotics and enzymes and prebiotics by Thrive.  I also take adrenal supplements and we both drink Trusii hydrogen water which helps with cellular communication and antioxidant support. Finally, we take ConcenTrace trace mineral supplements, a zinc supplement, and a D3/K2 supplement.

Again, supplements are all personalized for what you are working on.  Remy and I don’t take all of these every day, but we do take all of these regularly and most of them would be helpful for a majority of people looking to optimize brain health.  I will dive further into all of this in the future, but I wanted to give an overview. I know it’s a lot, and they certainly aren’t cheap, but I will do my best to help you prioritize.  Also as for my company - anyone with a disability and their caregivers get 40% off all Radical Roots products.  CBD has been a game changer for both me and Remy and really helps me be the best version of myself so I can be the mom that Remy deserves.  

Almost every sentence in this blog should be a book on its own.  I have provided lots of book suggestions and more in depth articles to help you dive deeper.  I’ll be launching a podcast soon to talk with the experts I have learned so much from. Please sign up for our updates and let me know what I can do and who I can interview to help you on your journey.  

Your child’s brain can change.  You can do this. Start with one change and soon these changes will become habits and soon your family will be thriving, in mind and body.  Trust me. I’ve learned the hard way. I’ve tried neglecting myself and giving everything to Remy, to my patients, to my pets. I’m an independent mama.  I know how hard and overwhelming this all seems, but I can tell you firsthand it’s doable. Remy is thriving and I am too. One step a time.

A letter to my fellow warrior parents

Mindfulness is the only way forward, gratitude is the only way through.

You can do this. 

You are allowed to grieve.  You are allowed to break.  But know, deep down, know, that you will get back up. 

1 in 20 children in America have a disability.  1 in 59 children have autism.  1 in 10 have ADHD.

Neurological dysfunction is becoming increasingly prevalent and the science (and the support systems) simply ARE NOT keeping up. Many of these children are suffering from neuro-developmental disorders that are compounded by the rapidly changing environment filled with chemicals and toxins; by stress and disconnection. 

I wish I could tell you that being a special needs parent is easy - that the world we live in is built with families like ours in mind. I wish I could deny the things everyone warns you about: isolation, frustration, heartache, countless sleepless nights. 

But I can’t. 

What I can tell you is that with that struggle comes an incredible amount of clarity.  When your child needs you to fight for them, to help them, to be their voice at every step of the way, the bullshit in life somehow just goes away. 

I studied Chinese medicine and mindfulness for 8 years before Remy (my son) actually brought it all into practice. I have only now: no time to worry about the future, no wish to ruminate over the past. I have only this minute, this moment to be the best parent I can be, for Remy.

You will grieve, you will fight, you will break.  And you will get back up. 

You will become the warrior your child needs. 

Depending on your child’s diagnosis you will meet doctors. So. Many. Doctors.  And therapists.  All. Kinds. Of. Therapists. And clinicians, and practitioners, and specialists, and social workers...

Listen to them.  And learn from them. 

And if you don’t like them, FIND NEW ONES.  If your doctor doesn’t listen to you, find a new doctor. YOU are the expert when it comes to your child - please don’t let anyone convince you of otherwise. 

I know you likely cannot change your child’s diagnosis. I can’t change Remy's genetic mutation. But I can support his biology and challenge his neurology to give him the best possible prognosis. So I’ve studied and searched... and I’ve found help and support.

I have been fortunate enough to go to many incredible doctors and integrative practitioners and therapists.  I have studied day and night, and travelled the globe with and for Remy, and there is one thing I know for sure:

There is Hope. 

That hope you hide, that hope you fear—it’s valid.  There are so many new treatment methods and therapy programs, so many targeted diets, supplements and technology.  I have seen children have results that many would consider miracles, but it is simply science.

I have tried to provide a starting point with this website.  I’ve collected so many books and researched so many programs. 

You can start almost anywhere, but the common thread between it all is that diet is the MOST  important, and it starts with making different choices in your kitchen, and how you eat when you’re out.  I make sure that Remy and I eat immaculately because food is important to me - everything that we choose to eat either helps us to a healing goal, or moves us further away. 

I get quality sleep and take my supplements too. In Chinese medicine you learn you must treat the parent to treat the child. You cannot be the advocate your child deserves if you don’t take care of yourself. This website is to provide support and options to parents, too.

We will all have different paths.  Our children are different, our challenges are different.

The sections in the website highlight the major pillars of neurological health: diet, detox, movement/sensory, oxygen and supplementation. There are links to my favorite books on each of those topics, research studies, biohacking tools, supplements and treatment programs.  I cannot write a path for you or your child, but I hope to help you find the support you need to carve your own way.

Mindfulness is the only way forward, gratitude is the only way through. 

Don’t focus on the questions. The answers will lead to more questions. Focus on today, focus on your beautiful child and how you can make them smile, how you might just be able to change their lives. And be grateful. Be grateful for your child, no matter the challenges, they will forever change your world. Be grateful for every inch stone and every giggle. Be grateful for coffee!

I am grateful for you.

And I am incredibly grateful to Remy. This is not the path I expected, but I wouldn’t change it for the world. 

Welcome to Holland.