When my older child got diagnosed with mold illness, mycotoxicosis, candida, PANS and had other issues, it was so overwhelming. The only saving grace I had was that I had been the most unwell person in our home for a while before either of my children seemed to get ill; so I had plowed through a ton of research already into the mold world and co-conditions. After my first few months of researching (while beginning my healing journey) I re-gained enough cognitive function to have a pretty good understanding of: environmental illness and mold, genetics, detox pathways, the gut, mycotoxins, and the immune system.
Once I began to regain tiny bits of my health, these jolts of realization and red flags would present themselves as I observed my children.... I realized that they were also very affected.
I am forever grateful that I am at my core truly a "mama bear", my children's well being comes first. I can not imagine the outcome for my kids (both short term and long term) had I not been so self-motivated to gain education, and to advocate for their health.
I was up against a pediatrician that had formerly been 100% on my side with all medical situations regarding my kids, I was feeling extremely comfortable with them for years and liked knowing I had a safe, consistent, and supportive doctor for the little ones in my family- something I had grown up without.
This all changed when mold began affecting us. In summer of 2020, I had already been so severely unwell for months that I mentioned it to the pediatrician to note it on file for my children, because I strongly feel in communicating everything going on at home for others that work with my children. I figured they would probably eventually need therapeutic support to emotionally deal with it all, and I wanted my health situation on file so they had something official on record to refer to.
By the end of summer, my cognitive function began restoring itself, and I was able to better pay attention to my children and the world around me. I noticed a large amount of unfamiliar symptoms: sudden anxiety/rage, constipation, and histamine issues in my older child (food intolerance and allergic reactions around our home and out in our backyard) and shared those with our pediatrician.
We were given a daily prescription of Loratadine, with the pediatrician sharing how "they empathized with our situation because allergies were rampant at that time in her house, and they changed her son into someone she didn't recognize" too. We were instructed to keep an eye on the symptoms and note any changes.
While the Loratadine dulled some of the histamine issues, other symptoms began piling up. It was at this same time that I was officially diagnosed with my mold illness and some co-conditions.
When I got my diagnosis, I became terrified for my kids' well-being since we share genetics and environment (ie. the exposure to mold). After my own dismissal from so many western-based allopathic medical professionals I decided there was no fucking way this was going to happen to my kids. I was not going to allow anyone to shove them aside and allow any potential problems to fester and grow into more complex illnesses.
I typed up an insanely detailed email to the pediatrician and outlined my only child's medical history, current onset of symptoms, our ERMI test for our home, our mold spore air sample test for our home, my diagnosis, and restated that we shared genetics so I was concerned for them. I also included links to research of prominent allopathic doctors that have studied mold and mold illness, and then concluded the email by asking to test my older child with an OATS and mycotoxin urine test. I offered to include pictures of the extensive mold if they were needed.
After all of that effort, I was once again written off as an overly-anxious mother by someone that didn't know how truly dangerous mold can be. I was told to relax and try giving my child a month of Miralax for the constipation and that we shouldn't rush to jump into testing.
I was not sure how I could have been denied my request for the OATS and mycotoxin tests- after all of the evidence I had given about there being actual mold present in our home, and how I tried to explain the genetic predisposition my children could have had toward mold illness because I had it and they were my offspring, and how severe my issues had been. I would have been paying for it myself, and it was tests I was asking for, not a sudden diagnosis- so why was getting a test request so hard?
I immediately decided to act on my own and advocate for my children's health and safety. I wasn't going to let another doctor tell me to "calm down" or that I was "overreacting", or "just to wait it out and we would see." See what? My kid get worse?
During IV treatments with my functional dr. I asked about natural remedies for constipation that weren't the recommended Miralax (because that shit is toxic as fuck.) She advised me to try magnesium and to start very low and titrate up to a bowel movement. In that same conversation, I shared my concerns about my children's health and she immediately told me to bring them in.
While cost was a huge issue by this point because of all of my treatments, I didn't want to waste any time helping my child, who was now showing a lot of never before seen symptoms of Autism, incredible brain inflammatory pain, and auditory and visual hallucinations, separation anxiety, OCD situations.
I wasn't recognizing my child anymore, I saw her less and less each day. It was terrifying and crushingly depressing. I felt like sitting with the pediatrician's suggestion of inaction was me failing my child, and losing them more every day.
Once I scheduled her first visit with my doctor, (Dr. Patel of EHC Buffalo,) I was listened to and validated immediately. Dr. Patel immediately ordered the OATS test and many blood tests that would tell about my kid's inflammation, liver function, other important blood markers, and IGE and IGG exposures. She started supplemental and vitamin treatments and detox treatments based on her symptoms and a very detailed entire life health history.
Later, when all of these tests returned to office, we were given our child's results. We continued treatment with tweaks made due to results from bloodwork and the OATS test, and within the first 3 months began to see her returning to herself in spurts.
Seeing glimpses of my child come back was one of the most beautiful things I have ever seen. It was so amazingly hopeful.
We returned to our regular pediatrician after we had done 6 months of treatment and updated them on all of my older child's developments. I asked if she (the ped.) had seen the bloodwork as well because it revealed the mold illness and co-conditions- the testing that I had originally requested. While the pediatrician looked embarrassed, she did apologize to me. She had admitted that she didn't know much about mold and how it can affect people differently, and said she was very glad to hear my older child was doing much better. She advised us to continue treatment under Dr. Patel and to continue communicating updates with me.
One year after I shared my concerns and requested initial testing the pediatrician finally officially updated my children's medical files to include a diagnostic code for Mold Illness and Mold Exposure (Toxic). It was in print on file.
Throughout this all I was upset for a long time and felt betrayed in a way by our pediatrician. I have since resolved those feelings.
Instead of ignoring my gut instinct and listening to the advice to wait and see and deal with symptoms with pharmaceutical Band-Aids, I was able to choose to advocate for my child and move forward in another direction. That new direction that lead the finding and acting on the root causes of my kid's issues. I trusted myself and pivoted when I met a wall in my way because I knew that my child deserved more than what they were being offered and they needed more than that...and as their parent it is my responsibility to give that to her.
I also looked at this entire situation as a way to educate someone that will be touching the lives of hundreds of other families in our community. By getting pissed off and shutting down communications, or taking my kids and leaving the practice when I met resistance from our pediatrician, I would have stopped the opportunity for growth for each of us.
I needed to work on accepting that medical professionals are fallible, and human, and make mistakes, or are not all-knowing as we are lead to believe in western society. I needed to work on establishing trust with a medical professional after I had faced so much trauma and gaslighting and denial regarding my own similar medical conditions.
She needed to grow in her ability to trust a parent's judgement about their child, to listen and to take the parent's concerns seriously even when dealing in diagnostic areas she was unknowledgeable in. She needed to learn about the mechanisms of mold and some of what it entails so she can better service her patients in the future.
When we advocate for our children we help them, ourselves, and the medical community.
Our family is still working on my oldest child's recovery day by day, and are working towards our younger child beginning treatment soon-for softer symptoms- as well when cost allows it. (My husband will follow up after just in case.)
The point I want to share with you after all of this I guess is that you have to be able to stand up for your child. Trust your gut, find someone that will listen to you.
Tips for Advocating for Your Kids:
1) -Share information in a factual logical way, not an emotional one. Be confident in what you are expressing.
2) -Log information in a detailed and clear manner.
Get a composition notebook and start tracking symptoms and all relevant information: who, what, where, when, etc. anything that you notice around when symptoms happen. Note any life changes, family issues, environment changes, diet changes.
Keep going, and clues will begin to emerge in patterns. This is all important info you can share later on with a medical professional to get a diagnosis and treatment that will best suit your child's needs.
(Keep anything that you share with medical professionals, or school officials, or co-parents, or anyone that works with your child on file. You will then have those records to go back on if you need them, and my hope is you never will- but be prepared.)
3) -Follow up. Be consistent and focused (but not aggressive) in your attempts to communicate with those you need to talk to about your child's health.
4) -Make sure your partner or another adult family member is on board. There is so much emotional and mental weight that comes along with the work of advocating for your child. You need to have someone solid in your corner to back you up and/or take some of the weight off of you.
5) -If you meet a wall in your way, you pivot.
We will all eventually meet a medical provider or doctor that won't listen to us, or will gaslight us, or will be unknowledgeable and unwilling to learn. You do not need to take that. Medical professionals are people that provide a service for us. We pay them. We are in charge of the direction of our health care and we ultimately get to choose what we do with our own bodies, and those of minor children in our care. If you are hitting a wall, find a new practitioner. Do some research and find someone that will listen to you and your child. Find someone that feels like the right fit.
6) -Take time for self-care. Does it sound corny? Maybe. But it is true. Medical trauma is a real thing and it can come from dealing with your own medical issues or from being a caregiver and deal with someone else's. Schedule time that you are not willing to talk about or work on advocating for your child's needs and focus on your own.
Take a walk outside in nature. Take an Epsom salt bath with soft music. Meditate. Play a board game with some friends. Watch Netflix. Whatever gets you into a parasympathetic mode and allows you real relaxation.
When the airplane goes down, you need to put on your oxygen mask first so you can then put on your kids. If you don't' put on your own- no one makes it.
Photo from Brett Davies/flickr