Sitting in the office of my 5 year old's pediatrician that morning, I was sweating LIKE CRAZY.
I couldn't tell if it was due to my nerves and anticipation of receiving my daughter's blood work results, or if it was one of the weird hot flashes I was randomly getting at the time.
Whatever it was...I was really anxious. I had been waiting for four VERY LONG weeks to get these results, but I had been worried for years. For a worried mother, that LITERALLY feels like holding your breath under water, for infinity.
But yet, this little voice in my gut was saying "You don't want to know this."
That little voice KNEW that when I was to leave this appointment, NOTHING would ever be the way it was before.
Before things started going downhill, we were a pretty healthy & put together family.
I was in the best shape of my life, had tons of energy, would meal prep every weekend, and had a health & wellness business that was exploding. I developed a love for running, and I CRAVED it daily because of how much it helped me with anxiety and how good I felt after.
We felt so lucky and blessed to have two healthy and precious little girls. Delilah was 3 ½ when Skylar was born, so our home was full of laughter and songs from FROZEN and TROLLS, and our days included spontaneous dance shows and tea parties.
Life was pretty perfect, and Brandon and I wanted to do everything we could to give them the best
But as Skylar grew up, I became increasingly concerned that something was wrong.
When she would have meltdowns, they didn’t seem to be “normal.” For example, let’s say a
kid throws a fit in a store for a candy bar, and the mom gives the kid the candy bar so they would stop crying. (Not healthy parenting, but remember - this is just a hypothetical example). In a healthy kid, the candy bar would calm the kid down, which was the whole reason for the fit in the first place. For Skylar, giving her the candy bar WOULD NOT calm her down. Cause it was never about the candy bar. Nothing would calm her down or ease her. If this was a real situation, and many times it was, I would have to leave wherever I was and get her home. As she got older, she would hit herself, sometimes banging her head against the wall violently, and ripping chunks of her hair out. She would say things to herself like "I don't know why my brain is doing this! I hate myself, I hate myself!"
Another sign to me that something wasn’t right, was that her body NEVER handled illness in a normal or healthy way. When her sister would get sick, she would fight it off and be well in just a couple of days. But when Skylar would get sick, it would take her WEEKS to fight it off, and she would get rashes and more symptoms with it. It's like her immune system was struggling to fight off these infections. At an early age, this is typical. But for Skylar, it got worse as she got older.
It was also inevitable that she would get sick if she were ever around ANYONE else that was sick. One time, after a recent infection, there were a few days in a row where she washed her hands SO MUCH that they became raw and blistered and she wouldn’t stop washing them and crying. My rational mind was blaming the soap, but my gut was telling me "This isn't normal."
When I expressed any of my concerns to her pediatrician, my intuition was squashed. The response was always, "Oh it's just a part of her personality! All kids are different!" And sometimes it was, "Well, how are YOU handling discipline? What are YOU doing wrong?" Assuming that the reason she was having fits was due to my parenting or something I was doing wrong.
So, we just adapted and we picked our battles.
I would run no more than two errands MAX in a single day. It was all she could handle to avoid a meltdown. But sometimes she had them anyways. We started taking the stroller everywhere, even when she was older, so she had a "safe" place where she felt protected when we were out and about.
We minimized going places that were too noisy, too bright, or with too many people. She had EXTREME sensitivity to places like this and they would almost always trigger a meltdown. It was just too much stimulation for her. Birthday parties were typically exhausting for our entire family, cause once we got home it was meltdown city. We let her wear what she wanted...which has always been soft and tight leggings and a soft t-shirt. Her clothes have to be snug, soft and fit “just right.” Nothing can be dangling from them or making noise. No bows, no ties, no decorative zippers. Shoes and socks are exhausting so when she finds ones she likes, it's usually all she wears. It was always so sad to me to see her get so excited about a cute sparkly dress, and then she would want to wear it, but PHYSICALLY could not bear the way it felt. We held on to so many clothes because she “loved them” but she really only ever wore just a handful of shirts and leggings.
During Hurricane Harvey, she got sick. Real sick. She broke out in a rash all over her face, hands and feet and ran an erratic fever. The hospital ER said they weren't sure what it was. The doctor we saw on FaceTime through a on-call service provided by our insurance had the balls to call it scabies. (We obviously knew he was wrong.)
When the flood waters went down and we were able to get her seen by her pediatrician, (the third doctor to see her), we were told it was "classic hand foot and mouth disease." (We later learned from the extensive blood work that she has never had hand foot and mouth disease.)
Approaching her 5th birthday, I began to worry if we were going to be able to get her potty trained. No preschool in our area would take an almost 5 year old that wasn't potty trained, and Brandon and I had literally tried EVERYTHING up to this point. She had a deep rooted FEAR of the toilet, and we had no idea where all this anxiety was coming from. I knew in my heart that we were doing this right, and taking breaks in between different methods we would try, but nothing would work. We had her evaluated by a pediatric occupational therapist’s office and they found her to have retained reflexes and psych issues but after 4 months at $600 a month 2x a week for therapy...we made zero progress and quit.
Then I noticed she was grinding her teeth really hard at night while she was asleep. She NEVER slept all the way through the night EVER. And the amount of sleep that she actually
got at night began to concern me. She was also "mouth breathing."
I noticed that she was sensitive to certain things as well, like the red dye in Benadryl would make her bounce off the walls and act hyped up. She was always constipated and having stomach pains. The separation anxiety got worse as she got older and not better and she started having irrational fears. Her eczema kept getting worse, instead of her growing out of it. Sometimes she would make this humming sound and not realize she was doing it, or consistently flick her eyebrow up and down without realizing it. She would also get intensely focused on an activity for hours, and not want to do anything else which was odd for her age. That feeling in my gut that something else was going on began to get stronger, and I finally began to listen to it.
Meanwhile, as I’m dealing with all of this, MY OWN HEALTH began to deteriorate.
One Sunday in early 2018, I was standing in the kitchen laughing and cooking with my kids and felt fine. Out of NOWHERE, there was a sharp & intense pain in the back of my head and within seconds a full blown migraine. It felt like someone walked up behind me and stabbed me in the skull with a giant butcher knife. The pain was so fast in onset and so strong that my vision went blurry and I immediately went to the ground. I went from 100% functional one minute, to completely incapacitated within a matter of seconds. The migraine stayed for hours. I went to the ER, had a CT scan, and was told everything looked fine. It was one of the scariest things I have ever experienced.
It started to seem like my supplements and things that use to help me...weren’t helping me like they used to. My stomach pain came back, my ears started ringing and aching again, and I was just getting worse all around. Overtime, I noticed that it was taking me longer and longer to recover from any exercise, or running. Even yoga was hard for me to recover from. The next day it would feel like I had the flu. My monthly cycles became nightmares from HELL. Each month the pain got progressively worse, and there wasn’t enough medicine or heating pads on earth that could help.
One day we went to the movies and I noticed that my eyes couldn’t focus on the screen. It was blurry, and I was dizzy and nauseated from it. But at this point, even riding in a vehicle gave me vertigo, and I really started to suspect something with my hormones.
The day I realized something more serious was going on was when I blacked out from the pain of menstrual cramps. I don’t mean fell asleep. I mean that the pain was so intense and getting progressively worse that I stopped what I was doing in the kitchen, made my way to the couch thinking I was going to have to dial 9-1-1, and then I blacked out. I woke up two hours later. The scariest part? I wasn’t home alone. Skylar was home with me. (This was one of those moments I was actually grateful for YouTube Kids.) Labs showed that I had a “minor” hormone imbalance, and an ultrasound showed that I had multiple cysts on my ovaries and cervix. My gynecologist said it’s most likely endometriosis and wanted to do surgery. (This was one of the rare moments that I did listen to my gut telling me I needed to find a new gynecologist.)
Then things started to get stranger...and faster.
My left eye started to twitch DAILY. I started to have involuntary twitching and movement in my fingers. I got more and more headaches, had constant nasal drainage that was regularly blood tinged. My nose would randomly bleed out of nowhere. The cold outside, even in Houston, was intolerable to me. My body couldn’t regulate temperature, and my hands and feet would turn blue and purple.
On most days, parts of my body just hurt to the touch. So when the dog would jump up on my legs I would scream out in pain. In addition to this, I started to get really intense joint pain that jumped around from my ankles, legs and arms. On the bad days, it was EVERYWHERE, intense, and kept me tied to the couch in tears.
I started to notice that there were only a handful of foods that I could eat without upsetting my stomach. The only time I ever felt good eating - was when I would do a juice cleanse.
Food was becoming such a hassle for me and a huge stressor. There’s nothing worse than being hungry and wanting foods you absolutely cannot eat.
I reacted to every smell I walked past. I literally could not go in the grocery store without getting sick from the perfumes on people and chemical cleaners. Everyday the symptoms kept stacking: joint pain flares, inflammed and swollen joints, rashes and itching, headaches, mood swings, random heart palpitations, extreme anxiety, chest pain, painful sores on scalp, extreme fatigue, numbness and tingling in my extremeties, and more. Then my hair started coming out in clumps, and it hurt to brush my hair or even touch it.
My nails were brittle and peeling, legs would swell on a daily basis, and I began waking up in the middle of the night completely SOAKED in sweat. My eyes were bloodshot daily.
Some symptoms I had tried to keep to myself but just couldn't anymore because they had been getting worse and other people were noticing. Like the time I had two sips of a margarita with some friends in Waco, and broke out in histamine like skin reaction all over my chest, while my fingers began to swell up into little red nuggets. Hey, it made for good party entertainment! But inside - my body felt like it was going to explode.
There were so many weird symptoms, just SO MANY of them...and they were all getting progressively worse. But the absolute WORST PART OF IT ALL….was seeing how it was affecting my family and everyone around me and not being able to do a damn thing about it cause I had no idea what was happening to me and how to stop it. Everyone knew that any events had to be planned around my cycle each month cause during that time I was basically worthless. But as time passed, there were days where I was in a ton of pain outside of my cycle too. These days scared me the most, because my gut was telling me that something bigger was happening here.
Some days I tried to toughen up and act like I wasn’t in pain. I put on my big girl pants and got out there. But I could only hold up that faccad for so long. My favorite thing to do was sit in the driveway with my girls and do sidewalk chalk and I couldn’t do it anymore. At this time, I couldn’t even hold chalk and run it across a piece of paper some days cause my hands would be in excruciating pain. It got to where I couldn’t even get through chopping vegetables to cook dinner. I didn’t have the strength in my hands to cut freaking carrots ya’ll! It was hurting my marriage, my friendships, my career, and my kids. My team slowly started to dwindle as I became incapable of being a leader anymore while handling everything, but I was trying my best and still I was missing out on so much.
And to be honest, even though I was experiencing all these symptoms and pain, my mind was so focused on Skylar, and making sure that we were doing all we could to help her, cause we were approaching the time to enroll her in Kindergarten.
So as I sat there in the doctor's office, sweating and my heart racing, I learned the biggest lesson of my life...to never EVER ignore my gut feeling ever again.
Skylar was diagnosed with PANDAS/PANS, or auto-immune encephalitis, which is inflammation of the brain caused by a viral infection, which is caused by a compromised immune system. Her brain was “on fire” or under attack, by her own body.
But that wasn’t everything the doctor discovered from her blood work. Nothing could have prepared me for the “BOMB” of information, that would forever change life-as-we-know-it….
“Also, I recommend you test your house for mold.”
In my head, it didn’t sink in at first. Her doctor began to talk about the reason why Skylar’s immune system was compromised. Her labs showed that she was being exposed to mold on a daily basis, and that it was affecting her tremendously because she was genetically prone to infection from mold. Not only that but she is positive for a haplotype that makes her genetically susceptible for her body TO NOT have the capability to turn OFF inflammation.
She wanted us to check our home for mold first, but not to be worried because it might not be there. She could be getting exposure from school, or another place she frequents. Plus, I was reassured that if no one else at home is having health issues, then most likely our home is probably not the problem.
Oh. My freaking Gosh.
Me. I was having health issues! But still...mold? There was NO WAY there was mold in our home. We were good home owners. We kept up with landscaping and maintenance of everything. We had exterminators out regularly. My OCD and pride kept me cleaning and organizing all the time. And even though we lived in hot & humid Houston, our home had NEVER EVER flooded from a hurricane, nor had we ever had a roof leak or pipe leak. So there was just NO WAY there was mold in our home.
But guess what ya’ll? THERE freaking WAS MOLD!
And it was in our HVAC system….HIDDEN in the insulation lining of the closet/plenum box.
And there was an insane amount of it. My mind raced. How long had we been breathing this in? Had Skylar been breathing this in since she was an infant? My heart sank. My stomach was in my throat. This shit caused my baby to get sick and now her brain is inflammed and she is only 5 freaking years old!!!
I was angry, scared, pissed, and shocked. I wanted to RUN from our home. I wanted to get away THAT NIGHT. But we couldn't. We had no where we could go.
I posted on Facebook for prayers. Then I disappeared out of fear and an unbelievable amount of overwhelm. I was losing IT.
The first phase I went through was ANGER. I wanted to sue the builder. It was their fault. We had problems with our AC since we built that place. We never stood a chance to live a healthy life in that home. My dad helped me contact some lawyers, and I stayed up late gathering documentation, while pushing through my own pain, reading our contracts and state laws. My precious little girl was paying with her health for their negligence. Our savings was gone and we were still trying to get on our feet from when Brandon was laid off. How on earth were we going to be able to afford the healthcare for Skylar and a healthy place for us to move to while we fixed the issue? But what I quickly learned was not only were we past the 10 year mark to sue the builder in the state of Texas, but our chances of winning were slim, because mold was GREATLY misunderstood.
And here's why...
Vulnerability to mold toxicity is only present in 25% of the population, and in people who have a genetic predisposition to it. This inhibits their body from clearing biotoxins.
A family can all be living in the same house with mold growth, but only one family member will become ill. This is because that person is the ONLY ONE with the genetic vulnerability.
Also, mold allergies and mold toxicity are NOT the same illness. "Mold allergies" are due to mold spores that are inhaled, and cause "hay fever" like symptoms. This is different than Toxic Mold Illness/Syndrome, which is due to the volatile toxic vapors / biotoxins / mycotoxins produced by mold that can cause a chronic inflammatory response, which is an auto-immune reaction, caused by poor clearance of these toxins in vulnerable individuals.
The next phase I went through was DENIAL caused by shock. Was this really happening? We had the mold removed and AC components replaced. And all of a sudden my health went downhill FAST. I was confused and frozen. But as I look back at this time, I realize that what was happening was classic mold illness messing with my brain, body & hormones.
I made an appointment to see my doctor who said he could run the same labs that were ran on Skylar. I was thrilled because that meant I would only need to pay my co-pay. When I showed up to my appt, he told me he was wrong and couldn't do the labs because he wasn't educated in reading the results and he was sorry. He gave me a list of infectious disease doctors to see. I called all the numbers that afternoon and couldn't get a hold of a soul. Some of the numbers were even out of service.
I called Skylar's doctor and asked if they saw adults. She said yes, ran my bloodwork, and when we got those results back everything we suspected was confirmed.
I was suffering from CIRS (Chronic Inflammatory Response Syndrome), a complex & multi-system biotoxin triggered immune dysfunction disorder.
In addition, some of my hormone levels were so “off” it was scary, and it was recommended I see an endocrinologist immediately. And to top that off, they found some yeast antibodies to Saccharomyces Boulardii in my GI Cascade that typically only shows up in people with Chron's Disease! YAY!! So an endoscopy and colonoscopy are in the books for January with a GI specialist.
For both of us to heal from all of this, the first step is to make sure we are in a clean air environment.
[Note: The thing you have to remember here is a "clean air" environment for CIRS patients is very different than a "clean air" environment for a normal & healthy person. Healthy people can handle breathing in mold spores, because their bodies recognize it as toxic and get rid of it naturally on a daily basis. Mold is everywhere and pretty much unavoidable.)
For CIRS patients, a clean air environment means clean and sanitized - no dust (mold settles on dust), and anything that mold spores might have landed on or touched needs to be cleaned or disposed of. Also, no chemicals, pesticides, or VOC emitting objects can be in the home as CIRS patients are overly sensitive to chemicals and it will just add to their toxicity level. Long story short: our home was clean and healthy for a normal person or anyone else - except for me and skylar).
This is the absolute HARDEST step and where we struggled the most. We got rid of almost everything we could. We cleaned and cleaned. And got rid of more stuff. And I kept getting worse cause I wasn't working on healing. I was stressed. And the whole process was taking forever, and my health was getting worse each day. And because insurance WOULD NOT cover our doctor, the medications or supplements, we were spending all of our paychecks and waiting for the next one so we could do more. We were scraping by and making painfully slow progress.
So in October, we decided to sell our home so we could cash out our equity and use part of that money to pay for all of our doctors bills, medication and supplements to get healthy and heal and take some stress off our shoulders. We moved into some brand new apartments and purchased a surgical grade machine that uses O2 technology to sterilize and clean the air in our apartment.
And now, here we are.
And our life will NEVER be like it was before.
Our current “normal” is taking medications/supplements every 1-2 hours...which makes it hard to go just about anywhere. And the amount of supplements and medications we are on is insane...but every bit necessary.
Before we go anywhere, we have to have more information about the type of environment that we are going to so that we don’t expose ourselves to more mold while trying to heal. We also have to stay away from any place that is smoky - from bonfires to cigarettes, or anyone that is sick, since our immune systems are compromised.
Eating food is a nightmare. We are suppose to be eating a fully organic AIP (Auto-Immune Paleo Protocol) diet and also be 100% gluten free. Trying to get a kid that has eaten goldfish off and on her whole life, to transition to organic gluten free “cheddar bunnies” just creates more sensory meltdowns. Change is NOT easy for her. And transitioning her to be 100% gluten free, which is a MUST for PANS kids, has been a nightmare for this momma, but it has got to happen.
And although this sounds like the END of a crazy story, it's actually just the beginning. Healing from CIRS and reversing PANS/PANDAS is not easy. It takes patience, and a crap load of dedication. And its really hard when everyone is not on the same page. Even though we are in a mold free environment NOW, we still have toxins in our bodies that we have breathed in for YEARS, and now we have to go through the process of helping our bodies to remove the toxins since our immune systems do not have the capabilities to do that on their own. We will constantly have to be on top of our immune systems, for the rest of our lives, to make sure we are healthy and strong.
Two weeks ago we learned that both Skylar and I both STILL have really high inflammation levels and our number one priority is to get those down immediately.
Inflammation leads to chronic disease...and we have been on that path for too long already and now it is time to reverse it.
There are so many rules we have to follow to heal our bodies, and the insane amount of stuff we have to take and stuff we have to avoid. We've FINALLY tackled the first step by making sure we are in a clean and sterile environment. But the next step is to take binders for one month that bind themselves to toxins in our bodies which are excreted out naturally.
When my kids were born, like many moms, I read everything I could on how to be a great parent, what they should be eating, how to protect them, how to discipline...but there was NEVER a book that warned me or prepared me for THIS. The more I read now on mold exposure and learn about what happened to my family, and how to prevent things from getting worse, the more scared I become for us and other families out there. And I pray that my story, can be the book for all new parents out there to learn from.
So on a daily basis...I practice gratitude. And I actually have A LOT to be thankful for. I’m incredibly thankful for the equity money we had in our home, or else we wouldn’t be able to start over. We had no where to go, and that was truly a scary feeling. It may set us back a bit in life, but I’m okay with that. And I’m so incredibly thankful that both Brandon and Delilah seem to be unaffected (health wise) from the exposure to mold. I know that all this change has had to be incredibly hard on them, ecspecially when they were feeling just fine, and I’m so grateful that they have been so supportive through it all.
INTUITION is defined as “the ability to understand something immediately, without the need for conscious reasoning.”
Whether you want to call it “a gut feeling,” or that “little voice in your head,” or intuition….my advice to you is to start paying attention to it. Mine warned me so many times over the years, and it was right. I’m so glad that I listened to it, and that I didn’t stop fighting for answers for Skylar. We were given this gift for a reason. And it’s better to have it be wrong, then to have it say “I told you so.”