PANS // PANDAS // MOLD TOXICITY
Our family has been on quite the journey with PANS/PANDAS and mold toxicity and after the hell we have lived through, I want to be available to help any family in need of info, prayer, a listening ear and being heard and seen through their journey, or resources because we had so little help and so little support through our journey. Unfortunately, our journey is STILL ONGOING but I will always make time and space to walk alongside another family going through or suffering with this. YOU ARE NOT ALONE and there is help! I pray the information I have shared blesses you.
What is PANS and PANDAS?*
PANS/PANDAS are misdirected immune responses that result in newly abrupt onset or worsening of OCD and/or restricted food intake, concurrently with two neuropsychiatric, cognitive, behavioral, or neurological symptoms in seven categories.
PANS is an acronym for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANS is a clinical syndrome defined by the sudden encephalitic-like onset of obsessive-compulsive symptoms and/or severe eating restrictions and at least two concurrent cognitive, behavioral, or neurological symptoms. PANS has multiple etiologies and disease mechanisms with no age restriction for diagnosis.
Anxiety, Separation Anxiety
Emotional Lability and/or Depression
Irritability, Aggression, and/or Severe Oppositional Behaviors
Behavioral (Developmental) Regression
Sudden Deterioration in School Performance
Motor or Sensory Abnormalities, including Tics
Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency/Urgency
PANS can be triggered by infections, metabolic disturbances, psychosocial stress, and other inflammatory reactions. Infectious triggers include upper respiratory infections, influenza, recalcitrant sinus infections, mycoplasma pneumonia, and Lyme borreliosis, among others.
PANS and PANDAS require a clinical diagnosis based on a child’s medical history and physical examination. PANS and PANDAS are both diagnoses of exclusion, meaning symptoms cannot be better explained by another diagnosis. There is no age restriction for a PANS diagnosis; it is not just a pediatric syndrome.
PANDAS, a subset of PANS, stands for Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus infections. Group A Strep (GAS) is the incitatory trigger. Sydenham’s Chorea/Acute Rheumatic Fever is the prototype disorder. Please note GAS infections can occur in many parts of the body – not just the throat. The onset of symptoms can occur within days of exposure to or contracting strep or within several months of the inciting infection.
Presence of OCD and/or tics, particularly multiple, complex or unusual tics
Age Requirement (Symptoms of the disorder first become evident between 3 years of age and puberty)
Acute onset and episodic (relapsing-remitting) course
Association with Neurological Abnormalities
Comorbid neuropsychiatric symptoms are universally present in PANDAS, similar to the diagnostic criteria for PANS with similarly abrupt onset/exacerbation as the primary symptoms of PANDAS. In particular, the somatic symptoms such as urinary frequency, mydriasis, and insomnia, help differentiate PANDAS from Tourette syndrome or non-PANDAS OCD.
*Resource: Aspire.care
In laypersons terms, it is easiest to understand PANS as an umbrella term for many triggers that create inflammation in the brain, leading to behavioral changes. PANS is a medical disorder with both physical and psychiatric presentations.
In technical terms, PANS/PANDAS are misdirected immune responses, often with an encephalitic origin, that result in acute onset of OCD, tics and/or restricted food intake, along with other neuropsychiatric and somatic symptoms. After the initial onset, PANS/PANDAS symptoms follow a relapsing/remitting course. Initial triggers may differ from secondary triggers. During each recurrence, symptoms can worsen, and new symptoms may manifest.
Symptoms can range from mild to severe. In mild cases, children might function well enough to continue to attend school. In severe cases, symptoms can become life-threatening due to extreme food restriction and/or suicidality. Many children with PANS/PANDAS are diagnosed with a psychiatric illness and prescribed psychotropic medications rather than being evaluated and treated for an underlying infection.
Resources for information provided and the chart from Aspire.care, an excellent resource for PANS/PANDAS.
Click on the chart to expand the full picture.
Our Family’s PANS/PANDAS Symptoms
Every PANS/PANDAS case is different, every child is different, how they respond to treatment varies, how their flares look, it’s all so varied, but I found it helpful in the beginning to hear symptoms that other families had. It helped affirm that we, in fact, were looking at PANS/PANDAS symptoms. I share more details about our PANS/PANDAS/Mold story on my blog. I want to point out that rarely did our kids have an active strep infection detected from a throat swab. Strep can be in other areas of the body.
Child 1
anxiety in school, aggression within the home only, palilalia, urinary accidents, paranoia including food paranoia, food restriction, amplified pre-existing perfectionism, OCD, self-harm, severe rage, severe mood swings, inability to regulate emotions, body aches, headaches, body convulsions, speaking with a strange voice, extreme fixation on something, insomnia, hallucinations, irrational fears, wanted to quit anything challenging, huge tonsils, easily irritated when others wouldn’t follow rules, night terrors, insomnia, mast cell activation symptoms such as red flushing on the face and neck and bright red ears
Child 2
a throat clearing tic, palilalia, mood swings, rage, huge tonsils, mast cell activation symptoms such as bright red ears, change in personality going from very social to insecure and self-conscious, stuffy nose and allergy-like symptoms
Child 3
OCD behaviors, like needing to push certain buttons on a calculator a number of times (hand washing was not something he ever needed to do) and extreme fixation on something, severe anxiety, separation anxiety, extreme rage, extreme mood swings, overly cautious with non-threatening activities (this played into his anxiety), easily irritated, insomnia
Resources
You are not alone. You are not crazy. Your child is not bad and you are not a bad parent. First, I NEED YOU TO HEAR THAT. We felt all of those things to our core: alone, crazy, we were blamed for having bad children and blamed for bad parenting. You know how much you love your child and how much you keep fighting for them to get better. Don’t ever allow a therapist or doctor to tell you otherwise. Their behaviors are the cause of a medical condition, not your parenting! My best tip is this: Because this is an incredibly challenging journey, be sure to accept God’s grace in all of the messy and complicated parts. He knows what you are going through and he wants you to receive the grace he has available for you. Grace upon Grace.
I have compiled a quick-link resource guide below, though most of the websites I’ve shared have all of this information. I just wanted to have a one-stop shop because I know how overwhelming managing all of this already is.
Helpful Websites:
Aspire.care
pandasnetwork.org
neuroimmune.org
stanfordchildrens.org/en/service/pans-pandas/what-are-pans-pandas
pandasppn.org
Labs to Order
A Great Flowchart for Diagnosis PANS/PANDAS
A Multifaceted Approach to Treatment
Comparing Different Treatment Modalities
Diet for PANS/PANDAS
Find a Practitioner
Doctor Appointments/Tracking Worksheet
Resources for Schools and Educators
Really Great Tips for Parents/Families
Books about PANS/PANDAS for Adults and Children
Find a Support Group
Additional Words of Support // Advice // Encouragement from Me:
Early detection, diagnosis and treatment is EVERYTHING!
If you suspect it could be PANS, the sooner you seek treatment, the better your chances are for healing! I cannot stress that enough. A friend of mine connected a mom to me who suspected her daughter may have PANS. The mom had never heard of PANS before but her friend had heard my story. We spoke for about an hour on the phone and she told me that these symptoms with her daughter had just started. I suspected it was, indeed, PANS and gave her a few resources including doctors to contact and labs to have ordered. She was able to get her daughter in to see a doctor a couple of days later, have lab work done, her infections were confirmed and she began antibiotics all within a week of chatting with me. Her daughter ultimately caught it quickly and is fully healed now. We, unfortunately, didn’t have that path. Misdiagnosing our PANS in the beginning likely made symptoms much worse and caused more damage than help.
Guard your marriage
I found a statistic at one point that nearly 80% of couples with PANS/PANDAS children end up divorcing. THIS IS HARD and it will test you, your faith, and your marriage to your core. I highly encourage parents of a PANS child to seek therapy. Many times, parents are traumatized by this sudden onset of behavioral changes, particularly when they are violent and scary. You may also get a lot of judgment from others who think your child is bad or your parenting is bad. I sincerely hope this doesn’t happen to you but it’s not uncommon. One of the most important things for couples to do is “armor up” together - and what I mean by this is make sure you remain unified, do this together (DO NOT put all of this on one parent), pray through this together, leave blame out of it.
Consider your options before spending money on every single test - This can get expensive
You may get lucky and find a wonderful practitioner who takes insurance for the care they are providing your child, but it is not uncommon to have to go to a doctor who is out of pocket and for some of the tests and labs that you may need to order to be out of pocket and very expensive. We made the mistake of paying for so many tests up front and I wish we would have slowed down and considered everything available to us before doing that.
Find a community to support you
There are private FB groups that are a wealth of knowledge when it comes to support, encouragement, sharing resources, and stories. But at the same time, they can also be extremely overwhelming as you read stories and start comparing other people’s stories to yours. Every single case is different and every child reacts differently to treatment so it’s nearly impossible to expect the same results that someone else received from their treatment. The ‘files’ section within these groups have a ton of great information. Use the search box at the top corner of the group to search for certain keywords instead of reading every single post. That’s when overwhelm starts to kick in. Everyone in these groups is super encouraging. Nobody knows like they do what you are going through. We are all in this together. Do yourself a favor and receive the encouragement.
Remember it’s not your child, it’s the inflammation
This is a tough one because so often we just wanted our kids to “snap out of it”, everything from the mood dysregulation and rage, to the tics and OCD symptoms. And, when violence is involved, like the time I had a plastic dump truck thrown into my face and got a black eye, it’s hard to not take it personally or get really angry. When they are in a flare like this, you must remember, it’s not your child, it’s the PANS. This is especially challenging when offenses are made towards other siblings and they have a hard time understanding that it’s not their sibling, it’s PANS.
Share your story and EDUCATE OTHERS
There is nothing to be ashamed of with this diagnosis. It’s not your fault, it’s not your child’s fault. So many families choose to stay silent because they are afraid of what others will think of them or afraid they will be judged or afraid of what their future holds for their child and/or family. It’s true - you may be judged, even by close friends and family. You know what your child and family is going through because you are there 24-7. Nobody else is so they can’t expect to know the full details. Hopefully, in time, your friends and family will come around to wanting to be educated and support you well through this. That’s really all you can ask. It’s important that you share resources with them so they can understand what is happening to your child, and sometimes, having the resources come from something other than you (like a website or doctor) is received better than if it comes from you. There are great websites, brochures/pamphlets, and other wonderful resources you can print out and mail or hand to your loved ones so they can become educated on what is happening with your child and hopefully then, they’ll want to support you instead of judge you. Also, I found that by sharing my story, more and more moms came to me seeking help and resources. This journey has inadvertently become missional for my husband and me as we educate, encourage and pray for others who are walking similar walks. How can we not help others when we know we would have loved to have received help ourselves in the beginning of our journey?
Self-care is so important
I’ve said this so many times already but I’ll say it again - this can be very, very hard on families. You can find yourself so wrapped up in anxiety, grief, anguish and every other emotion that you forget to breathe, much less take care of yourself emotionally, spiritually and physically. Please find a way to take care of yourself. Even if you need to enter it into your calendar or planner, schedule time for yourself, doing something you enjoy. You may find that you need some additional, perhaps temporary, support from a therapist or doctor with processing your emotions or the trauma and PTSD. I needed to add a sleeping aid because my insomnia was making the daily stress heightened. Many parents of PANS children take medications to help with anxiety. There is nothing wrong with that! You must take care of yourself or you won’t be able to help your child. For me, I have found creating art, listening to music, getting out in nature, journaling, even just spending time praying and meditating on God’s word to be most helpful. I also pursued an interest (went through a 9 month program to become a master naturalist) which gave me something else to immerse myself into that wasn’t PANS related.
If others have symptoms in your home, you may want to test yourself, too
It’s not uncommon for multiple family members to be affected by PANS/PANDAS and that is so, might be a puzzle piece for understanding the big picture of everyone’s sickness. For us, after our daughter was the first to present with symptoms, we realized our sons had them, too. Then, later, I realized I had some neurological symptoms. We discovered the common denominator for all of us was hidden toxic mold in our home. That was the infectious trigger for my entire family. Genetics also comes into play for some families with PANS.
Stay safe
In some of the hardest days, safety was our number one concern - safety for our PANS child, safety for the siblings, and safety for ourselves. In extreme “flares”, it’s hard to know what to expect, what your child is capable of, because even they don’t know as they often have very little to no control over their symptoms. It’s important to have a safety plan. For instance, you may need to ensure your child is never left alone, or never has access to objects that might be considered dangerous. We had to lock up sharp knives, lighters, even pictures that had glass in the frames so the glass couldn’t be broken and used as weapons. I have a friend who has a PANS child that she has to keep completely separated from her other child because he always tries to harm his sibling. Know where you can go in an emergency. Know the closest ER and EMT/fire station. Know that you can stop at an EMT/fire or police station if you need help, too. Whenever we needed to drive to the emergency room, we tried to find someone to ride with us because our child tried to jump out of the moving car at one point. So, we learned to have someone with us to either drive our car, or sit with our child. In some cases, we had to stop at a fire station and request help because violence was too much for us to control on our own.
God Can
God knows your pain. Even if nobody else sees your struggle, your fight, your endless tears and anguish, God does. He sees you and your family. He loves your child more than you could ever imagine, and he loves you, too. I have struggled with that for years, thinking, ‘Surely if people knew what we were going through we’d find the help we need or someone would offer to sit with us or take our children for a night to give us a respite, or some provider would want to care for our family and help us find answers.’ But that didn’t happen for us. That, coupled with the providers telling us it was our fault and doctors telling us there is no such thing as PANS, and family not understanding what we were going through, we felt COMPLETELY UNSEEN. To be honest, many days, we still do. But I have to take that thought captive and KNOW THAT GOD SEES IT ALL. Please don’t lose hope. Pray. Ask your friends to pray because some nights, you may have no words left in you. And know that it’s OK to be angry with God, it’s OK to pour your heart out to him - the good, the bad and the ugly. He is a big God and he can take it. But remember, he is God, and he is able. We are moving into seven years now that we’ve been living with this and some things have improved, but mostly things have gotten much worse for two of our children. We STILL haven’t gotten the healing we seek. My husband and I pray every single day for God to take it away. And I’m beginning to come to terms with the idea that he might not. This might be forever for us. And even if it is, we will still praise him.
Please hear me - If you need someone to pray with or over you, please never ever hesitate to reach out. It would be my honor to pray with or over you and your family. Truly.