Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

Continue reading

Aug 10

To Med or Not To Med?

Recently, I witnesed a debate about medicating kids with invisible disabilities. Predictably, sadly, it got a little heated on both sides. Now, I have strong opinions on this as it relates to my own kids but let me state upfront that I do not feel that my opinions should be held by anyone but me. I’ve lived through moments where it took every ounce of self control, every molecule of patience, just to get to the next moment in time without losing my mind. I’ve had days where I’ve wished with all my heart for a pill that would make it all go away. I’ve also had days where I’m grateful that no such pill existed because walking a different path brought unexpected gifts.

Sometimes the decision to use a medication – for any illness – is a slam dunk. Other times, it comes only after an agonizing internal conflict. Sometimes it doesn’t come at all and you choose to slug through med-free. I think the reason many parents decide to give a child a pill – by prescription or an over the counter supplement – is because that particular medication just might give the body and brain something that’s missing. It’s a decision driven by the desire to give your child – and your entire family – a better quality of life; to provide freedom from hell on earth. It is not “taking the easy way out,” using “mother’s little helper” to shirk the hard work of parenting. It is choosing, each in our own way, to be a responsible, nurturing parent who’s trying everything possible to do the right thing. But there is no “right” thing in a way that’s “right” for everyone. Or even “right” forever. There is only “right” for right now.

Continue reading

Jul 24

A Glimpse of Normal

When you raise a child with “challenges,” you can spend a lot of time measuring your life against a “normal” ruler – some imagined gauge to see just how abnormal your life is compared to other families. Some days, you look around and decide you’re not doing so bad. Other days, you feel like your family life is so off-the-charts insane that you may never find your way back.

Having kids with PANS (pediatric acute-onset neuropsychiatric syndrome) means our normal-o-meter goes up and down based on health. When illness blows through the house, Normal becomes a place on the other side of the globe.

It’s a rare event to have both kids healthy at the same time.  But bucking tradition, both started this summer in a good place. After years of medical battles, I felt like I was finally getting a date with Normal. This is the story of how the date went.

Continue reading

Apr 04

Someone Has Some Explaining To Do

Another parent-teacher conference has come and gone and this year, I find myself a changed woman. You see, in years past, I have always seen conference time as an opportunity to advocate for my children. It’s been my time to check in to make sure their teachers understand what makes them tick. I’ve enthusiastically shared tips for reading the body language of anxiety, patiently tried to explain how OCD can look like ADD, and pleaded for an email at the first sign of any behavior changes (which for my kids can mean a PANDAS relapse is on the horizon). Over four years, my audience has sometimes indulged me and sometimes even been genuinely interested in learning and sharing. Sometimes, I’ve been met by that polite yet pained smile that tells me I’ve just been labeled “the neurotic mom who clearly needs a valium.”

 This year, spring conference found me jaded. Whether it’s me who’s changed or just an unfortunate failure to connect, I haven’t been able to click with my kids’ teachers. Instead of wanting to use my fifteen minutes to foster understanding, I just followed the typical script, heard how my kids were making progress and made a timely exit.

Where did that naïve, driven, committed mother go? Could my passion for wanting to change hearts and minds really dry up in only four short years? Or am I just past the point of having the energy to re-explain everything year after year? When I first learned about OCD, I was eager to share what I knew. Now, after so many failures to reach my audience, when I hear “Gee, he doesn’t seem to wash his hands any more than the other kids. I really don’t see any OCD,” I should realize that this isn’t said to be hurtful. It’s a sign that OCD remains poorly understood and that teachers aren’t being given the training that could help. But in that moment, after being on the receiving end of so many similar comments, I just want to stand on top of the desk and shout “You ninny – not everyone with OCD washes their hands!” How I wish I could find a way to explain that long goodbyes in the school lobby do not make me a helicopter mom but instead allow my child to slowly disengage at her own pace; give her the power to start the day with a small sense of control instead of having the noise and chaos of a bus trip overwhelm her before she’s even set foot in the building. I guess I’m not losing my passion so much as I’m getting discouraged. Continue reading

Feb 09

The Color of Worry

My kids and I all suffer from anxiety. For the kids, it’s infection-triggered; a disorder broadly called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The infectious trigger can be strep, Lyme, mycoplasma, or any number of bacteria or viruses. PANS, like PANDAS, causes sudden episodes of intense anxiety, OCD, AD/HD, anger, emotional meltdowns, loss of fine motor skills like handwriting, brain fog and other “co-morbid” symptoms. It’s a smorgasbord of neuropsych labels.

My own anxiety likely comes from genes that affect the way my body “methylates” or fails to produce enough serotonin, one of the neurotransmitters that influence moods. It also comes from raising two kids with PANS.

Continue reading

Jan 19

Accepting Holland While Still (Desperately) Aiming for Italy

view from planeEarly on in my battles against childhood diseases, I came across the poem by Emily Perl Kingsley entitled “ Welcome To Holland.”

It’s a classic poem that does an excellent job of describing the heartbreak as well as the gifts that come with raising a child with autism. Some parents love the poem – especially parents who, like me, have kids not with autism but with an illness that is treatable/curable. I loved it because the heartache rang so true but the despair of shattered dreams did not. “I’m not doomed to accepting my son’s illness,” I always told myself, “but this poem explains my sorrow.” Then I’d console myself with the conviction that I was a warrior mom who was going to slay the bacteria that was keeping my son sick and then restore his perfect childhood. I did enjoy the part of the poem that spoke about cherishing the gifts of today and enjoying the unexpected lessons that an illness can bring. But I read that part about acceptance with a shield of denial – my son’s issues were only temporary. I didn’t really have to learn to love Holland. We were still headed to Italy. Holland was just an unplanned layover.

Continue reading