When my son was first diagnosed, I was so overwhelmed by the complexity of the condition, the number of possible root causes and triggers, and desperately searching to find something to help him.
Finding the Next Right Thing is meant as a resource for parents of children with PANS/PANDAS
- To provide a PANS/PANDAS 101 for parents of newly diagnosed children
- To explain how herbs can heal our bodies
- To provide information on the way to avoid autoimmune diseases
- To highlight how critical our environment is to our health
- To raise awareness of PANS/PANDAS and the impact of our environment
- To empower parents to be the best advocate for their children
- To encourage parents that have been through the struggle and made it to the other side, to share their stories. What worked for their family and why? Let’s pass down our collective experience to parents in the middle of the fight.
Finding the Next Right Thing means recognizing that we won’t have all the answers in one day, and we will not find all the causes and triggers in one day.
So, take a deep breath and focus on the step right in front of you. Trust that with each positive intervention, you are moving the needle closer to better health. And remember, you’re not alone on this journey
Finding the Next Right Thing means recognizing that we won’t have all the answers in one day, and we will not find all the causes and triggers in one day.
So, take a deep breath and focus on the step right in front of you. Trust that with each positive intervention, you are moving the needle closer to better health. And remember, you’re not alone on this journey
Why did I feel led to create FNRT? Because it shouldn’t be this HARD. Pediatricians should be trained to recognize the symptoms of PANDAS/PANS in their patients. Parents should expect their child’s pediatrician to acknowledge their child’s autoimmune disease exists. Families should have access to specialists that take medical insurance. Families should have medical insurance to cover the two core medical treatments for the children on the most severe end of the scale.
But that is not the reality we are living in.
Instead, families are gaslighted by doctors who tell them PANDAS is make believe and they need psych meds. Parents on average have to go to 3-4 doctors before someone believes them. I had two pediatricians dismiss me, and a pediatrician who is a family friend tell my aunt that PANS/PANDAS wasn’t real….
Why did I feel led to create FNRT? Because it shouldn’t be this HARD. Pediatricians should be trained to recognize the symptoms of PANDAS/PANS in their patients. Parents should expect their child’s pediatrician to acknowledge their child’s autoimmune disease exists. Families should have access to specialists that take medical insurance. Families should have medical insurance to cover the two core medical treatments for the children on the most severe end of the scale.
But that is not the reality we are living in.
Instead, families are gaslighted by doctors who tell them PANDAS is make believe and they need psych meds. Parents on average have to go to 3-4 doctors before someone believes them. I had two pediatricians dismiss me, and a pediatrician who is a family friend tell my aunt that PANS/PANDAS wasn’t real….
And the families that suffer the most are the ones without the resources to pay thousands and thousands of dollars for treatments. Parents can spend 25k-75k on IVIG, their child’s lifeline. And if children do not receive treatment they need for years and years, they have less of a chance of a full recovery. And instead, they have a higher likelihood of living with anxiety, depression, OCD, suicidal ideation. Sadly, some children have lost their fight with the disease…
If you live in America and you do not have the spending power to pay 50k on the only two established treatments for the condition, you may not be able to afford the conventional medical model for PANS/PANDAS. And naturopaths and functional medicine doctors are typically out of pocket and several hundreds of dollars per visit.
But even if you don’t have access to those, God gave us herbs to heal our bodies.
If you told me two years ago that I would be taking classes in herbalism, making my own herbal glycerites, syrups and capsules, and now growing my own herbal medicine, I would not have believed you!! But as is true of many mothers before me, the pain of watching your child suffer will drive a mother to do just about anything. [#mom strong]
My mission is to empower parents to push beyond the nay-sayers, to show parents how to educate themselves, to be a resource for all things PANS/PANDAS for parents, and to raise awareness.
It’s my belief that spreading awareness + parents with the knowledge to dismiss medical providers that are not educated about PANS/PANDAS = more pediatricians like ours. We are blessed to have found an amazing pediatrician. I am forever grateful for her intervention in our lives.
If your pediatrician is less than fully on board with the diagnosis and treatment, move on, keep looking. And then when your child heals, share the treatment and good news with the former pediatrician. I do not say that in an ugly sort of way.
Pediatricians are humans too; they weren’t taught about PANS/PANDAS in medical school or . For a lot of children, the before and after antibiotics is unmistakable. Sometimes it takes witnessing that change to make someone a believer. We all have the power to make more pediatricians aware of PANS/PANDAS just by sharing our story. If your child was treated by a PANS/PANDAS doctor, send the former pediatrician the doctor’s notes so they can review the case. Pediatricians don’t even need to be proficient in treating the children; we just need them to be knowledgeable enough to identify the condition and refer them to another doctor. Share your stories!
Our world has become way more toxic than most people understand.
And, because people do not understand the health consequences they are not taking actions to protect themselves. And, by not educating mothers and soon-to-be mothers, we are not taking any action to protect the children that will be born in the next 5 years, and we’re growing more toxic by the day. Babies born today will be born with on average 287 number of chemicals in their bodies! This is not ok.
Knowing what I know now and having children with an autoimmune disease, I would have treated the 2+ years before I wanted to conceive a lot differently than I did (and I ate pretty clean and was very healthy). There are so many simple things a woman can do to rid herself of toxins and other undesirables.
When I was trying to conceive I tried to eat organic, low sugar, lots of veggies, stay away from pesticides or other chemicals, take my prenatal vitamin (which is a whole other issue), but those things are not enough. You have to be more proactive in reducing your toxic load and nourishing your body at the cellular level.
And, I don’t think there can be a question whether children born of a mother with low metal levels, low chemical toxic load, low EMF exposure, optimal mineral levels, and robust cellular health, will be a healthier child than children whose mother has accumulated a massive amount of PFAS, glyphosate, other toxic chemicals, heavy metals, and poor cellular health. And, the stronger their bodies the less chance they will develop an autoimmune disease or other chronic illness.
When my oldest was first diagnosed with PANS/PANDAS, the idea that I could have more than one child with the same condition did not enter my mind and so I didn’t immediately start my other children on all the same protocols (gut health, minerals, detoxing) at the same time that their older brother was in a massive flare. I now have more than one child with PANS/PANDAS.
Did you know there is a gene mutation that is sometimes referred to as the “autoimmune gene?” If you know about your gene status early in life, you can adopt the lifestyle factors to avoid “turning on” the gene.
Hi! I’m Brooke. I’m a mom to three sweet boys.
One is a very precocious gifted lego master momma’s boy who has such a kind heart—he earned his first cash reward he could take with him and spend at the aquarium on a prize and he gave the money to the Save the Sea Turtles Foundation; one is the most gentlest purest soul of a boy who is a dancing social animal who loves dogs, all shapes and sizes but most especially golden retrievers; and one is the hot mess express neurodivergent wild child who is extremely artistic, loves to help his mom or dad around the house, and is the last to go to sleep at night and the first to wake up every morning.
And, they have PANS/PANDAS and ADHD, and probably some other acronyms.
I married my high school sweetheart, and he likes to constantly remind people that I’m older than him (by thirty-eight days); in high school we competed to see who could have the highest grade in our Latin class, and now we compete to see who has the highest credit score. He says he married a hippie, and I agree.
I’m a parent in the throes of PANS/PANDAS slowing moving from surviving to thriving. Our oldest went untreated for three years and was in a very dangerous state 18 months ago.
The last couple of years have brought me to my knees, and I’ve felt Jesus pick me back up. I believe he has brought me here, and he’s my why.
I’m very southern, love to garden and I’m obsessed with hydrangea, dahlias and peonies. I love the beach, the smell of rain and sleeping with the window open (which my husband hates), I find thunderstorms relaxing (if I’m someplace I’m not going to be electrocuted or have a tree fall on me), I love walking barefoot in the grass and tea instead of coffee, and I hate mullets. I’m fascinated by the power of herbal medicine, and all there is to learn!
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