My Blog

First, possible trigger warning - medical issues (gastrointestinal, neurological, etc.). Second, I’ll do my best to stick with the long story short version.

My son was born at the end of 2020. I was elated to be a first time mom. He was (and is) awesome. 

At four months old I noticed blood in his stool for the first time. It was trace amounts, but still my first time mom anxiousness had me quite worried about it. 

At six months old, the bleeding was different - large amounts, spilling out of his diaper. Significant enough that I took him to the ER. Didn’t learn a single helpful thing from that hospital visit, but paid a bill that was reflective of some serious medical expertise. 

Began solids, as many do at around 6 months, and it went horribly. We had one sick kid. He hated the texture of all foods, he barely ate, and his poop situation worsened. We stopped solids. We sought help from our primary care doctor. We got a referral for a nearby children’s hospital. 

At eight months, we tried solids again. It was slightly improved from 6 months, but still so difficult. 

At nine months, we finally got in to see a specialist at the children’s hospital gastroenterology department. We had already begun eliminating foods and trying to figure out what was “safe” for him to eat. With direction from the specialist we ended up cutting out dairy, gluten, and soy. Severe food allergies was the specialist’s thought. 

Our son’s health seemed cyclical - times of good when we thought perhaps we were onto something, and then back to bad when everything was awful again. 

Just after his first birthday he had a bout of super sick. And this time it really stuck around. He pooped around the clock (longest he could go without a bowel movement was 3 hours - night or day). And they were horribly painful (he’d curl himself into the fetal position on the floor). Loose. Green. Full of mucus and blood. 

Other symptoms came along too. He threw up every night after dinner. He rubbed his eyes and head like they hurt terribly. His skin had all sorts of rashes and breakouts. 

Appointment after appointment with the children’s hospital, and no real answers. 

Running parallel to that were our pursuits in holistic care. We were trying thing after thing, going to place after place, trying to get to the root cause. What was making him so sick?

Labs were run. He was severely anemic, among other things. He got iron infusions and other meds. 

At 18 months my son had a blood transfusion and then both an endoscopy and colonoscopy. The diagnosis came back: Very Early Onset Inflammatory Bowel Disease (VEO IBD) Crohn’s Disease. 

We began medications. Those failed. We began stronger medication. That also failed. We began Infliximab (and remain on it to this day). It worked. The symptoms were at bay. 

It felt good to have an answer. But it didn’t all sit well. Infliximab has a pretty gnarly black box warning. It isn’t even approved for kids my son’s age. It felt like what was necessary to save him, but with major potential side effects and risks. 

Our sweet boy finally walked. Turns out he had just been so sick he couldn’t. But after the blood transfusion and infliximab, he had new strength. 

Fast forward. Two was a dream. A literal dream. He was the sweetest, happiest kid. He was mostly healthy. He was stable. He was eating. 

We still had lots of doctors appointments and went to outpatient infusion every 2-8 weeks for infliximab. Finding the right dose was tricky. Finding the right pace for administration was tricky. It was all hard, but things felt stable. We landed on appointments every 5 weeks and a slow rate for administering the meds and we had a dream nurse (Nurse Sam) who made it alright.  

We began seeing a new functional medicine doctor, Dr. Lum. The intent being to still get to the root cause. Why IBD? What was going on? How could we support our son more holistically? Could we ever get him off infliximab and manage IBD without such a powerful immunosuppressant?

Our second child was born. Another boy. Life was so sweet. 

Then, chaos. 

What had happened to our child? Overnight he was a different kid. His behavior was wild, just unreal. Other people didn’t see it much. It mostly came out at home around mom and dad. But boy, it was something else. And in my gut I knew it was something else. Not tantrums. Not jealousy over a new brother. Not being almost three. Something was wrong and my mom instinct told me so. 

I searched the internet high and low. And I finally found it. PANDAS/PANS. I had never heard of this, but we checked practically all the boxes. I remember texting the link to the information to my husband and saying, “Read this. This is it.”

Our functional medicine doctor was ahead of us. Practically saw PANS/PANDAS coming. It can look like a lot of things, but for us it was:

• compulsive hand washing 
• intense separation anxiety 
• sleep disruptions 
• rage and volatile emotions 

Then things settled. Not entirely back to normal, but livable. 

The next round hit right after his third birthday. It looked a little different. The rage was back - he could hardly even be around his little brother. The separation anxiety was back too, but now we checked locks and were utterly obsessed with “doing things right.” Tasks had to be done repeatedly, restarted until some unseen bar of perfection was met. Until the obsession or compulsion was satisfied. 

And at that point, our doctor asked for the first time, “Is your home moldy?”

The answer was no. At least I thought. 

But behaviors continued to go up and down, and the second time he asked, “Could it be mold?” I didn’t hesitate. 

We ran the labs. And there it was. Mycotoxins so sky high. My son’s body just totally under attack from toxic mold. 

And so everything changed. Our understanding of the last three years of our lives. Mold became the topic I studied and researched and learned. 

And that about gets you up to speed. Thanks for reading.