I’ve gone back and forth on how to start with this story. Chronologically? To the point? There are so many layers to it and a lot of depth. There’s a message within each step along the way. Words of advice. Words of healing and understanding. Maybe even a wake-up call someone is needing.
There is truth in here. There is some sadness, a lot of frustration, resistance, resilience, and victory.
I have a lot of emotional healing to do around all of this too. The comments, the accusations, the jokes, the doubt of care towards a sick parent of sick children. It’s tough to relive by sharing this, but also therapeutic knowing I might be able to help another family.
We are on the bright side of a dark illness, and I’m here to share, simply because I know so many others are fighting this unknown on some level as well.
Piece by piece we are feeling ourselves, I’m getting my son back, my baby is vibrant, I recognize myself and significant other again. Two years of questions, unknown answers, and quite frankly, lost time with my family.
In June of 2022 I found out I was pregnant with my baby girl and decided staying home full-time with my then 4-year-old was best for my family. I had already been home more with him and having him work with me and starting to feel I couldn’t keep up physically or mentally. I stepped away from projects and just focused on my family.
By October of 2022, I was starting to feel intense pain all over my body, my digestion was a mess, my energy was as low as my nonexistent patience with just about anything. Pregnancy? Nah, couldn’t be, but that “had” to be the answer, for now. My son was starting to lose focus in his day to day and I could tell he was just “changing.” He’d scream when upset, unable to regulate his emotions well. And somehow he’d snap out of it like a total out of body experience for him. I could see it in his eyes, it just wasn’t him. Pregnancy and me not feeling well? Maybe. Developmental leaps? Maybe. But nah, there was more, I knew it. We carried on, I continued blaming how I felt on Arlo’s behavior, my pregnancy on my weird symptoms. Nothing helped the pain my body felt or the stomach ache I constantly had.
Airo arrived at the end of January 2023 and we had the most perfect home-birth. I was ready to start feeling better and getting us in a healthy, happy groove. Nothing changed. My body ached, nothing helped, my stomach was at it’s worst. Arlo was starting to react to foods with congestion, throwing up, coughing, and easily upset. Airo was a “fussy” baby. I also hurt so bad I could barely hold her. Just laying her on my stomach hurt to touch. I was constantly sad and frustrated I couldn’t even hold my baby. This was not postpartum depression. I was stronger mentally than that. I knew something wasn’t right I just couldn’t quite figure it out. I cut out this and that and road the waves of us feeling slightly better for a little bit and back being hit by a train.
I started blaming the floors in the house because as soon as I left, I felt better. Less sore in my joints and arms. But it seemed Arlo would get a worse cough when we got back from being out and about for the day. There was loneliness with this. Not wanting to be around others to worsen our weakness, or even the energy to explain how we felt. “He’s not contagious, I just can’t figure it out yet.” Knowing we’d feel better leaving the house but for some reason when we’d get back we’d feel awful for the next few days, this was a battle. Extreme exhaustion and unable to get back in a groove easily. My mental capacity was wearing thin.
Summer rolled around, and so did the mice. This seemed to be a theme for many other households. Something to do with nuts falling? Living next to corn fields, I could not keep the mice or dust out of our house. Arlo was having more frequent reactions, coughing/sneezing/watery eyes, throwing up, less energy and focus time. For the second summer in a row, our HVAC froze over causing water backup and a leak in the fabric lined vents. Water and mice droppings in our vents. I had the duct work cleared and listed the house.
I knew something in there was causing us to be sick, for me to feel the way I was, and me to be so disconnected with my kids’ health. I was capable of better health, their bodies were strong. Something was wrong. And it all started when we began staying home more full-time.
The house sold quickly, and we moved into an apartment I felt comfortable with being in since we’d been at the property before the house. I vividly remember moving in on a Saturday and by Monday my body had stopped aching in my legs and hips. Still upper body I related to baby holding and unpacking. I was relieved. Arlo was getting better too. This was good.
Within two weeks, he was back to coughing, my body was failing me again, and more weird symptoms rising.
I had my eyes checked, got glasses and expensive eye drops to help my vision and sagging face. I had lab work drawn in December to conclude high thyroid TPO antibodies linking to Hashimoto’s. Cause? Age…pregnancy… hormone imbalance.
I was determined to get us better. I needed answers for why my body continually attacked itself. I wasn’t set with that bloodwork being the end all results. That didn’t explain the kids, nor add up with our healthy lifestyle.
This apartment was on the shaded side so I knew deep down winter would be extra hard for me to get through being stuck in a dark, cold, small two-bedroom place with 2 adults, 2 kids, 2 large dogs. With us all still reacting, I bought a camper and found a spot in the warmer southern Ozark mountains and in mid January the kids, Chip, and I headed for camp. Cody knew we needed this for our health. For my mental health and the help to get some answers I needed.
I had started an AIP Diet and focused on healing my gut. For less than two months I took a recommended prescription for my thyroid. I stopped because I knew it was not the answer… there was more to it than this. I wasn’t settling with the fact I aged and had a baby for the way I felt. I just needed to heal. The stress of the house and sick kids, it was a lot. I saw a naturopath chiropractor in the south for more labs and a DUTCH panel for my hormones. Nothing super abnormal, especially to be breastfeeding. I did the AIP diet very strictly for 8 solid months.
Both kids were getting better. No coughing, Airo was growing, minor cradle cap finally fading. We were outside daily throughout the two months over the winter and I saw improvements all around. I can remember the extreme aches, the lack of energy, the numbing face, the sadness of not being able to keep up with my kids. Was I just stuck being like this? How would I be able to start homeschool in a few months with my brain lacking the ability to focus and even be productive. How would Arlo be able to with how he was feeling every few weeks? I couldn’t give in to this.
We headed back home mid March, camper in tow. Several weeks no cough or weird reactions. Moods were good. Within a week of being back in the apartment symptoms came back. Both kids. Was it just Iowa and this is how it would be?
And the burning question I’m sure so many are asking? Why didn’t I take my children to a medical doctor? I knew to my core that was not what was best for them. I knew our bodies were reacting to something unseen. Food, air, water…environmental. A medication was not the answer. Pokes and needles for testing was not the answer. The waves of feeling good then not just kept me questioning and fighting to try and figure it out.
We eat clean, drink high quality water, detox regularly, avoid screens, get in bed rhythmically. Our bodies were not failing us, they were fighting for us. Something was wrong, but we were in fact strong.
In May of 2024, we found our dream home. The relief, the excitement, what a blessing to be to this point for our health and our future.
In June, the kids and I went on a 3 week camping trip East. The most perfect experience! We all felt amazing, stuck to our healthy habits, and explored each day. While we were gone, the major flooding in Iowa occurred. Not in our apartment luckily, but the downpour of rain kept the humidity high and the soil wet. We got back July 1st. By July 3rd my kids were the worst I had ever seen them. Their feet became covered in blisters, their coughs were horrid and nonstop. Sleep didn’t exist.
Cody started feeling weak and just icky. Very rare for him. He made the comment, “you guys are just better when you’re camping.” I thought, you are exactly right. Again, it’s something in our living space making us sick. He started having dizzy spells, my dogs wouldn’t stop throwing up. We had all officially started falling apart to the point I was in full fight mode for an answer.
My best friend mentioned the dreaded word she had before that I blew off out of fear.
Mold.
I got to my research and …
ALL. THE. PIECES. CAME. TOGETHER.
This was it. I was about to get my answers, because I knew all the dots connected. And if I trusted anyone else more than my own motherly instincts, it was this gal who had heard about everything all along the way for us and is a pioneer for her own health.
I loaded up the camper and out of that apartment we went. We stayed in the in-laws backyard, thankfully. Still paying for the overpriced apartment and realizing so much of our belongings were about to be tossed, again, oh and buying a house. This was not the stress I was going to allow to get in our way of healing.
I got us on a detox protocol specifically for mold and mycotoxins. They got worse the first week, but I didn’t question it. That’s a typical response to detox. Very hard to witness as a mother, very hard. My babies are warriors. They got better, and better. We were there a month. Still coughing every hour on the hour especially at night. Arlo at one point hit a 103 fever so I took them in a practice that would honor my direction for care. They said they looked too healthy to really do much and an allergist would need to be seen. Nope. Not the right path. I had taken him to a muscle testing chiropractor before this and he said his “brain was being poisoned” …. Neurotoxins…not what he said but that’s what mold does. He recommended a detox as well.
We were getting better. My energy was coming back, less pain, I could actually eat what I wanted without spending the day in the bathroom regretting everything.
We moved into our home at the end of August. I had mold specific cleaner for our clothes and items we wanted to keep. Everything got washed or wiped down, even dishes. As I’d bring things in, the kids would have coughing fits. And after bringing in a mattress we thought might be okay, both kids reacted! Arlo the worst of course. Confirmation again. We tossed more stuff. I can also smell what does not need to be near us now too. A very distinct funk I never smelled before. I hope never to smell again.
I had a hair test ran on Arlo because I needed concrete answers, a little more closure. I knew he’d need to avoid other things too for proper healing. I needed to let the people know who were doubting me and our lifestyle. If I heard, “how are your kids so sick/coughing so much – dad is a chiropractor, you all eat so well and still have this going on” blah blah blah uneducated, rude comments, one more time, I was going to let each person know exactly how I felt about their lack of encouragement and understanding of what we were fighting.
Side note: putting down parents of sick kids is highly disrespectful and the least helpful thing you can do. Use your words wisely.
6-year old’s results: Stachybotrys. Exposure and reactive to this particular mold/mycotoxin.
Case closed.
We are now in October and the kids are finally sleeping through the night without coughing. It’s very dry and dusty so the occasional cough comes up, but I am keeping the PTSD at bay and just continuing to give them what their little growing bodies need to fight invaders.
My baby girl is growing and courageous. Arlo is reading because he can now focus and enjoy being himself again. He isn’t talking like a different person or a baby. His eyes and face are not swollen. He’s gentle and kind and loving again. I don’t ache from head to toe. My stomach is solid. My arms and hands aren’t going numb at night. We are sleeping well again. Cody and my dogs are looking, feeling, acting healthier again. My home is safe and I am AWARE of every single square inch for safety and no water leaks. I do not doubt myself for my health or my kids’ health.
I certainly don’t wish a moldy home on anyone. It’s a silent killer. It’s hard to diagnose the symptoms. Many people are laughed at and blown off for care. It is a serious matter not to be taken lightly. It’s expensive and scary, but so is years of illness.
We threw away thousands of dollars of furniture, household items, personal care items, and more…twice. With each move. If you are sick in a home, be mindful of the things you take with you to the next one. Mattresses and couches are like sponges to mold and mycotoxins. Just toss them, and never get used ones! I have always been a fan of second hand and thrift shopping. It will take me a lonngggg time to get comfortable with that again.
I have information regarding mold below for further education around the topic. I also have our symptoms broken down through the time I believe we were exposed.
About Mold / Mycotoxins
Mycotoxins and mold illness can produce a variety of symptoms. Many people looking to determine if mycotoxins cause their illness and symptoms spend hours researching and reading. To determine the root cause of your symptoms, professional testing should be done.
What Are Mycotoxins?
Mycotoxins are toxic airborne compounds that are formed from molds or funguses. Mycotoxins can be produced from a variety of molds and these molds can grow on foods as well as in carpets and drywall. If inhaled or consumed, it can result in terrible symptoms.
What Are The Symptoms Of Mycotoxins & Mold Toxicity?
While symptoms can vary from person to person, there are a collection of symptoms that develop from mycotoxins. Also, there are hundreds of different types of mycotoxins which can have different symptoms develop. Some of the primary symptoms of mycotoxins are:
Respiratory Symptoms Of Mycotoxins:
- Coughing
- Wheezing
- Shortness of breath
- Respiratory infections
- Asthma-like symptoms
Allergic Reactions Of Mycotoxins:
- Runny or congested nose
- Sneezing
- Itchy, watery eyes
- Skin rash or hives
- Swelling, particularly of the face, lips, tongue, or throat (anaphylaxis)
Neurological Symptoms Of Mycotoxins:
- Headaches
- Dizziness
- Memory problems
- Difficulty concentrating
- Brain Fog
- Confusion
- Fatigue
- Mood swings
- Depression
- Anxiety
- Irritability
- Numbness or tingling sensations
Gastrointestinal Symptoms Of Mycotoxins:
- Nausea
- Vomiting
- Abdominal pain or cramps
- Diarrhea
- Loss of appetite
- Weight loss
Skin Symptoms Of Mycotoxins:
- Itchy skin
- Skin redness or inflammation
- Rash or dermatitis
Immunological Symptoms Of Mycotoxins:
- Reduced immune function
- Increased susceptibility to infections
- Autoimmune reactions
Cardiovascular Symptoms Of Mycotoxins:
- Irregular heartbeat (arrhythmia)
- Chest pain
- Palpitations
Hepatic (Liver) Symptoms Of Mycotoxins:
- Jaundice (yellowing of the skin and eyes)
- Elevated liver enzymes
- Liver inflammation (hepatitis)
- Liver damage or failure
Renal (Kidney) Symptoms Of Mycotoxins:
- Decreased urine output
- Swelling of the legs, ankles, or feet (edema)
- High blood pressure (hypertension)
- Proteinuria (presence of protein in the urine)
Hematological Symptoms Of Mycotoxins:
- Anemia (low red blood cell count)
- Bleeding disorders
- Decreased platelet count (thrombocytopenia)
Endocrine Symptoms Of Mycotoxins:
- Hormonal imbalances
- Thyroid dysfunction
Reproductive Symptoms Of Mycotoxins:
- Menstrual irregularities
- Infertility
- Birth defects (in animal studies)
Physical Symptoms Of Mycotoxins:
- Back Pain
- Chest Pain
- Body Aches
It’s crucial to remember that the kind of mycotoxin, exposure intensity and duration, personal sensitivity, and pre-existing medical issues can all affect the severity and type of symptoms.
If you live with multiple people who have been exposed to mycotoxins and you are the only one experiencing symptoms, that is very common. Just like allergies, mycotoxins can affect people differently. There are factors like age, genetics, exposure or overall health that can determine mycotoxins affect on your body. That means you can be suffering from the effects of mycotoxins while the rest of your family is essentially immune to the levels of mycotoxins in the air.
TEST TEST TEST! Mold toxicity can feel different from one person to the next. Many experience pain and discomfort in a variety of ways. Some just headaches, but others can simply have full body aches, while others can feel pain in their stomach and gut. With such a variety of experiences from the symptoms of mycotoxins, it can be difficult to diagnose.
Mold is everywhere; it’s outside, it’s inside, it’s on your grapes that have been in the fridge too long, there’s no escaping it.
The issue is, mold from water damage is far more dangerous than the mold that will come in your window on a summer day. The toxic soup of chemicals from the WDB (water damaged building) is in the air and the dust of every water-damaged building. The even worse news is, it’s estimated that over 50% of buildings in the US are water damaged in some way. And how many of those owners actually know of the damage? My guess would be maybe 5%. Of that 5%, how many know the extreme health issues this can cause? Maybe 5% of those people. The odds are against you if you’re affected by this biotoxin illness.
One of the scariest things about mold is that it often has no smell and is often hidden, so you have almost no chance of knowing it’s even there. If you smell that ‘musty’ smell, that’s a bonus, and it gives you somewhere to start. Now, I should take back ‘bonus’ because it actually means your mold is so healthy that it has extra resources to produce that secondary metabolite, the mVOC that you’re smelling.
Mold itself isn’t the most dangerous enemy; it’s the mycotoxin it produces to combat other nearby molds. I should mention, not all molds create mycotoxins, but mycotoxin emitting molds are what make them ‘toxic’. In this fungal battle for territory, we get caught in the middle. As the mold’s spores go airborne to stake new claims, the toxic mycotoxins are released into the air for us to breathe.
Stachybotrys, also known as black mold, is a fungus that produces mycotoxins that can cause serious health issues in humans and animals:
- Macrocyclic trichothecenes
These potent mycotoxins can interfere with ribosome function, activate stress responses, and form covalent adducts. When ingested, they can lead to stachybotryotoxicosis. - Saturated toxin
This toxin can access the brain tissue and increase the production of Aβ plaques, which can contribute to the pathogenesis of Alzheimer’s disease.
Stachybotrys is a dangerous mold that can cause a variety of health issues, including:
- Respiratory distress
- Mucous membrane irritation
- Neurocognitive dysfunction
- Dermal toxicity
- Epistaxis (nose bleeds)
- Eye irritation
- Hematopoietic toxicity
Stachybotrys is commonly found in wet indoor environments, such as water-damaged homes or air ducts. It usually grows on materials that contain cellulose and that have remained damp for a long period of time.
People with mold allergies can experience hay fever-like symptoms after exposure to mold, such as headache, sneezing, runny nose, red eyes, and skin rash.
My family symptoms:
5 year old –
Speech regression (baby talk)
Easily upset/angry
Swollen eyes
Red watery eyes
Persistent cough
Coughing so hard throwing up at night or during the day a “cough attack” turns purple/red then looses all energy/scared
Cognitive shifts in behavior
Hard to breath at night from cough / short breath
Wakes without knowing, crying, panicked from cough, unresponsive to me & does not remember anything
Heart murmur
Blisters on feet
Crazy reactions to bug bites
Body aches, spiked fever (signs of detoxing/eliminating)
1 year old –
Cradle cap until new house or long times away
Easily over stimulated as a baby
Upset easily
Startled easily
Apartment:
Blisters on feet
Red eyes
Persistent cough
Throwing up at night from coughing
Hard to breath at night from cough / short breath
Her detox stage was her worst. The time we moved out of the apartment.
Mom (Me) –
House:
Hashimotos diagnosis
Severe body aches in joints
IBS / high food intolerances
Easily overstimulated, fear, frustration, anxious
Always thirsty always having to pee
Easy sinus infection / bloody nose
Brain fog / weak memory
Facial numbness
Weak eyesight
Apartment:
Arm and hand numbness
Unusual headaches
Dad –
Anxiety
Skin issues
Body pain
Dizzy / vertigo
Dogs –
Throwing up randomly. Chip at least once a week over the 2 years. Did the first week at new house hasn’t since. Gunk in ear of Cookie that required a deep clean. (Slept on side on the carpet at apartment.) Threw up occasionally, no cause.
We are healing from what was hidden from us for so long.
Please test. ERMI – not air quality. It’s better to rule out and get answers. Move. Start over. Detox.
Sources:
https://farmacy.com/blogs/mold/is-mold-affecting-your-ability-to-heal
https://peakintegrativemed.com/what-are-the-symptoms-of-mycotoxins-mold-toxicity
https://pmc.ncbi.nlm.nih.gov/articles/PMC8945704
https://imold.us/surprising-effects-mold-has-on-children/
https://paulsakson.com/blog/black-mold-danger-to-children/