OK, I know this is a HUGE statement to make but I have to tell you that our family recently found our magic pill for helping my ADHD kiddo. Or, maybe more accurately we have finally found a magical diagnosis.

Magical, yet grounded in cutting-edge science. Let me explain.

For the entire nine years of my child’s life, we have known his mind and emotions work differently than most. His emotions come fast and furious and his crazy-high IQ make him acutely aware that he’s different. He’s never been able to calm himself – no pacifier or “training program” would help him figure it out… (Teach him how to “cry it out” in bed? I don’t think so – the kid would have literally cried himself to death had we let it go that long). He clearly has ADHD, anxiety, and struggles with depression. He has even struggled with suicidal thoughts and self-harming intermittently. (Insert mother’s heart-break right here).

We’ve tried ADHD medications, diets, therapy, oils and ADHD coaching. If someone somewhere suggested a strategy that might help our ADHD son, we tried it.

All of those things made some difference, but nothing ever really seemed to give my son the reprieve from sadness, worry, and explosive feelings that I knew he deserved. The little person inside my son — the person I knew he really was — was buried by impulsivity, anxiety, and emotional dis-regulation.

I would often wonder what I was doing wrong. What could I do differently? I was becoming an expert in parent coaching strategies and while they were making some impact, it wasn’t enough to bring calm to his eyes.

I stayed up late at night trying to find an answer. Trying not to go to places of despair in my pure exhaustion with it all.

I mean, if I couldn’t help my kiddo get through third grade successfully, how in the WORLD was I going to help him navigate middle school, high school or – gulp – adulthood? I had horrible visions of him growing up into a misunderstood, frustrated, troubled teenager. I mean, being a teenager is hard enough but I knew my son was susceptible to following the wrong crowd, experimenting with drugs, battling depression and anxiety, or engaging in reckless behavior.

So after an incredibly hard spring we went back to our physician. Despite all of the remedies we were trying, our son was still dis-regulated and it was time to discuss changing his medications. Again. Ugh.

Our doctor (who I L.O.V.E., by the way) listened to our experience and, like all of our other ADHD-related providers, was stumped about what to do next.

And then she suggested something I hadn’t thought of before: genetic testing through a company called GeneSight.

{FYI, there are many other ways to get genetic test results, which is a topic for a whole other post. However, this is the affiliation that my provider has.}

According to my doctor, this test would primarily help us determine which medications would be the most effective given our son’s specific genetic make-up. With the results, we would be able to make informed decisions about what medications would have the highest likelihood of effectiveness.

It wasn’t a guarantee – a LOT of factors aside from these particular genes impact how a body responds to medications. However, I looked at it as one piece to this crazy ADHD puzzle.

We were all in.

The nurse came in, got a quick cheek swab from my son – yes, no blood – and we made an appointment for the following week to get the results.

Fingers crossed. And toes. Toes crossed, too.

A week later we were back in the office for the results. The doctor came in with a big old smile on her face. Hmmmm….

As we went through the report we got some interesting information about medications that may be more effective than others. In fact, we found out that the medication our son had been on for all of 2nd grade wouldn’t be metabolized well… no wonder he felt so crappy that year… {insert another mom heart-break right here}… But overall, the results were interesting but not life-changing by any sense of the word.

I was confused – why did our doctor seem so happy? My heart started to feel heavy… just another set of tests that provided murky results and no real answers.

And then she turned the page and her smile widened. That’s when I first heard her say, “your child has a heterogenous mutation on his MTHFR gene.”

Say what?

The doctor went on to give us a very simplified version of what this means. Essentially, she explained, our son was unable to process synthetic folic acid – the stuff that is in most of our processed foods, most traditional vitamins, and in anything that says “enriched” or “fortified”.  Start reading labels… it’s nuts.

In “normal” people without the MTHFR mutation, folic acid is converted into something called 5- methytetrahydrofolate (also called L-methylfolate or methylfolate). Methylfolate is used in our bodies to do many many things, but one of them that really matters to my son (and all of humanity, really) is the process of creating neurotransmitters and helping them work effectively. In short, our doctor went on, if our son is unable to effectively create neurotransmitters we can throw all the meds in the world at him – none of them will work fully.

Our doctor explained that our son has a heterogenous mutation on the C667T allele, And that maybe our son would benefit from a simple supplementation. She wanted us to try to bypass his ineffective methylation cycle, and supplement directly with 5-methytetrahydrofolate (also called L-methylfolate) and methylcobalamin (also called Methyl B-12).

All of this may sound very overwhelming – a lot of big words that took me about a month to figure out how to pronounce – but in simple terms, methylfolate and methylcobalamin are the bio-available forms of folic acid (vitamin B-9) and Vitamin B-12. It’s the way these vitamins show up in actual foods like kale, broccoli, etc.

So that is the extent of our understanding with which we left our doctor’s office – a basic description of what the issue might be, and a rudimentary hand-scribbled schedule of how to administer the supplements, increasing the dosage over the course of a month depending on how he tolerated them.

{Since this time I have learned SO much more about this process. But for this post, I’m sticking with our experience. Stay tuned for a lot more on resources and information about this issue.}

As you can imagine, I didn’t even go home after the appointment. I immediately went to our local co-op, bought the two supplements she “prescribed,” sped home and gave them to our son.

{Keep in mind that you can’t just buy methylfolate anywhere. The traditional brands sold at Target, CVS, or even GNC do not contain methyl folate – they use the synthetic version of folic acid that’s also found in all of your enriched flours, fortified foods and processed foods. I get our vitamins at the local co-op and online. I’ve included the methylated vitamins we use on our Shop page for your convenience.}

As we gave our son the first doses, you could say we were cautiously optimistic. As parents of ADHD kiddos, we’re all familiar with having our hopes dashed by lackluster responses to the latest “cure”.

However, within two days – ONLY TWO – of giving my son a low dose of methylfolate, he told us that his head “began to clear,” and he felt much more calm in his body. He literally told me that he “wasn’t happier… he was clearer.” I thought I might be imagining things, but I swore that his shoulders and his eyes both relaxed like a huge burden had been lifted.

His teachers began to notice a difference almost immediately. His classroom teacher called the change “astounding”. His attention span lengthened, his motivation to do well in his work showed up, and his ability to listen and follow directions improved.

I began receiving one positive compliment after another about my child. Even the lunch lady went out of her way to let our son’s teacher know that she couldn’t believe how calm and polite he was in the lunch line. Something he had struggled with previously. Mind you, she had no idea of the changes we had made. Everyone – friends, parents, teachers, therapists, coaches, our family… all asked me what had changed.

He began to express empathy for his brother and sister in a way that he could never do before. His hair-trigger anger response relaxed. His ability to process and respond to disappointment became more age-appropriate.

There is not an aspect of my child’s personality or function that hasn’t been improved since we found this little genetic mutation and started treating it.

My child clearly needed this supplement. The impact of these supplements – that cost literally pennies each day — have been nothing short of a magical.

Hands down this has been the most impactful “medication” we have ever given our child. I have the son I always knew was deep inside this little troubled person. He is finally accessible!

Now, to be super clear, I’m not suggesting that this MTHFR mutation caused my child’s ADHD, his anxiety, or anything else. But clearly for him, his inability to properly methylate exacerbated his conditions so much that nothing we tried could be fully effective.

Certainly, my son isn’t “cured.”  However, we now have a child who is able to use very basic strategies that can help him harness his ADHD – strategies we’ve tried to help him implement for years with limited success until now. He now has what I call the “brain space” to learn how to regulate his emotions, relate to others, and control his impulsivity.

And THAT is nothing short of magical for our entire family.

WHY DO YOU NEED TO KNOW ABOUT MTHFR?

While I am not suggesting that every person with ADHD, anxiety or similar disorder suffers from a MTHFR mutuation, science says that a very significant portion of the population suffers from this mutation. An estimated 50% may have inherited one copy of the C677T allele (like my son), while an estimated 25% may have inherited two copies (which is even more serious). Uh… why wouldn’t we all want to know this?!

While the mutations aren’t uncommon, not everyone will experience the same ailments. The impact of this mutation on your health – or your child’s health – is going to depend greatly upon a number of other variables including other genes, health conditions, and environmental factors.

According to some experts who study MTHFR, the methylation process is one of the most overlooked functions within human bodies, because it is involved in literally every bodily function.

It has improved his health, my health, and the quality of life for every single person living in our house. It is magic in every sense of the word.

THAT is why I want you to know: because it’s NOT uncommon; because it CAN dramatically impact your child’s physical and mental health; and because there are SIMPLE things you can do to begin addressing it.

So, if our story sounds like yours – if you have a gut feeling that there is something more to your child’s condition or if the medications you’re using just aren’t working like they should — it is not unreasonable for you ask your doctor about the possibility of an MTHFR mutation.

Some doctors may order a genetic test while others may do a blood test to measure homocysteine levels, which are an indicator of whether the methylation process is working effectively. Yet others may have you try a low-dose of methylfolate and see if it works (although this approach feels like just more of the guessing game I was trying to get away from, but it’s definitely cost-effective).  

And, unfortunately, most doctors will have absolutely no idea what you’re talking about so you’ll be forced to find another health care provider who does. {www.mthfr.net and www.mthfrdoctor.com provide lists of doctors / practitioners who identify themselves as knowing about MTHFR mutations.}

As we continue down this journey I promise to keep you updated and informed about our experience. If anything I hope it can help you help your kiddos become amazing people!

In the meantime, here are a few of my favorite resources to learn about MTHFR mutations:

MTHFR.net

National Institute of Health

www.mthfrdoctors.com

https://doctordoni.com/2014/04/folic-acid-and-mthfr-could-you-have-a-genetic-mutation/

https://doctordoni.com/2015/03/understanding-the-methylation-cycle-and-its-effect-on-health/

http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/

http://wellnessmama.com/27148/mthfr-mutation/ 

Together, we’ll figure this out.

XoXoXo,

Honestly Erin

Disclaimer: I’m not a physician, and I’m definitely not offering any medical advice. This article is for informational purposes only. The content in this article is not to be construed as providing medical advice. Rather, I’m pointing you in the direction of reputable information and providing my personal experience so you can make your own choices in consultation with your health care professional(s).