I think my child has PANS/PANDAS…
What do you do when the child you’ve known suddenly isn’t that child anymore? What do you do when you are researching in the wee hours of the morning looking for answers and stumble across PANS/PANDAS? I am writing this blog because this is an issue that is near and dear to my heart. In fact, it is the entire reason I left my career as a wedding and newborn photographer and went back to school to study homeopathy. Families with children struggling with PANS and PANDAS are in desperate need of help. Modern medicine doesn’t have many answers and so often the answers they have only help temporarily. I cannot count the numbers of times in groups that I’ve have seen parents absolutely devastated because they had to call the police on their children….because they were either a harm to themselves or family members. I’ve seen many posts of kids with PANS/PANDAS that have committed suicide because of this horrible disease. I’ve seen marriages and families ripped apart. PANS/PANDAS is a fight, a constant fight…not only within your household and your children, but also within the system. Many doctors either don’t believe in PANS/PANDAS or refuse to listen and send your child for psychiatric care instead. The doctor who finally did listen and diagnosed my kids told me something that stuck with me. He said, “You can’t talk cancer out of cancer patients, just like you can’t talk PANDAS out of PANDAS patients.”
So what happens after a diagnosis? It largely depends. It depends on what kind of practitioner diagnosed them, what their area of expertise is, and what kind of mindset they use to treat disease. Most of the time, they get put on long term antibiotics which we known can cause a whole host of other issues. Another common option is IVIG. IVIG is Intravenous Immunoglobulin. Do you know the cost of ONE IVIG treatment? $5,000-$25,000. Do you know how many states have laws requiring insurance companies to pay for PANS/PANDAS treatments? Ten. One round of IVIG may help, but more often than not, families are having to do multiple rounds of IVIG. I’ve seen families talking about 5, 10, 20 rounds of IVIG…. I’ve even seen upwards of 80 treatments of IVIG. IVIG is not only extremely expensive and overwhelmingly not covered by insurance, but it is also extremely hard and taxing on the body.
What is PANS/PANDAS?
PANDAS stand for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. The both occur mainly after some sort of infection. In PANDAS it is associated with strep. It causes the blood brain barrier to be broken causing brain inflammation and the body’s immune system starts attacking healthy brain cells. Many times these changes happen very suddenly but not always. The symptoms of PANS/PANDAS are:
Obsessive Compulsive Disorder (which can manifest in many ways)
Restrictive eating or food refusal
Tics
Anxiety
Seperation anxiety
Emotional lability
Depression
Irritability and aggression
Behavioral/Developmental regression
Deterioration in school performance/school refusal
Changes in handwriting or ability to do math problems
Sensory issues
Choreiform movements
Hallucinations
Fight or flight response
Dilated pupils
Urinary problems
“It is estimated that 1 in 200 kids has PANS/PANDAS”
PANDAS is diagnosed usually between 3 years of age through puberty. PANS has no age limit. So what is the difference? The difference lies in the trigger. PANDAS is associated with a strep infection. Symptoms don’t always immediately show up following an infection. Sometimes it can take months. Just having a history of strep can be an indication. PANS can be triggered by infections, metabolic disturbances, neurological issues, psychological stress, or other inflammatory responses such as pneumonia, Lyme, Bartonella, Epstein Barr Virus, Covid, or the flu. It can also be triggered by non-infectious things like mold, environmental toxins, endocrine imbalances and psycho-social stress.
There is no medical testing, no single test, or biomarkers for PANS or PANDAS. It is a clinical diagnosis. There are so many different symptoms and the symptoms can present differently. The symptoms aren’t linked together and are often blamed on age or some other diagnosis. Often times, it is just purely dismissed. Symptoms also typically remit and relapse, something that PANS/PANDAS families call a “flare.” Its a dreaded word to hear in the PANS/PANDAS community.
“It takes an average of 11 years between symptom onset and treatment”
Eleven years! That is a staggering amount of time for someone suffering with an unknown illness to wait to be diagnosed. Read more below about how homeopathy can help…even without a diagnosis.
Below are some quotes that can be found through stories of kids with PANS/PANDAS.
My brain is on fire.
My brain feels crazy. Why can’t I make it stop?
I feel like I am possessed by the devil.
I don’t want to be bad, but I can’t help it. Don’t stop loving me.
It would just be easier for everyone if I wasn’t here anymore.
Can you imagine what it’s like as a parent to hear your child, sometimes as young as 3 or 4, say something like these quotes to you? Speaking from experience, I can tell you it is horrible. You want to take all their suffering away but you are lost.
Luckily, PANS/PANDAS is getting a lot more attention and awareness. Education and awareness is super important for these kids. This isn’t a behavioral disorder, this isn’t the result of “lack of parenting.” This is a physiological process in which their is a misguided immune response resulting in their brain becoming inflamed.
PANS/PANDAS from a Homeopathic Standpoint
If you are new to homeopathy, I have blogs on what homeopathy is and what is isn’t, how it works, and how homeopathic consults take place. Homeopaths look at PANS/PANDAS the same way we look at anyone suffering with any disease. How is it effecting the person, what symptoms are they having, what causes the symptoms, when do they happen, how do they act? In homeopathy, a diagnosis isn’t the key that we must have to help. Can it be helpful in some cases, sure. But homeopathy is based on individuality. So one kid’s PANDAS make look totally different than another kid’s PANDAS. It is in the individuality that we find the remedy that is going to be helpful for that particular child. It’s when we can gather the entirety of the disease and symptom picture that we can prescribe a remedy. PANS/PANDAS cases are deep, chronic, autoimmune diseases that should not be treated at home by trying different remedies that may have worked for someone else’s child. It is imperative that these cases are seen by a trained professional homeopath who can track remedy reactions, know what to do in a flare, and know how to follow a case long term to uproot susceptibility.
Another aspect of having a child with PANS/PANDAS that I don’t feel like gets talked about enough is the family members who are living in the same household. There is a reason divorce rates are sky high for families with kids suffering from PANS/PANDAS. PANS/PANDAS doesn’t just effect the kids dealing with it, there are also family members that take the brunt of the symptoms that these kids can’t help. Parents and siblings suffer too, often in silence. This is why I encourage parents and siblings to get homeopathic care as well as the child with PANS/PANDAS. You are all living within the same energetic pattern and household, everyone will be effected. It’s amazing how giving mom or dad a remedy can also help the kids. Because mom and dads energy has shifted; meaning maybe they are calmer, maybe they can deal with irritability and stress easier, that can make a big difference in the way the kids react. Calm parents and care takers is helpful not only for kids with PANS/PANDAS, but also for the parents and caretakers themselves. Speaking from experience, I waited 2 years into my kids PANDAS journey before I got homeopathic care for myself. I wish I had done it sooner. Make time for yourself parents, to take care…because this isn’t easy for you either.
What next?
I have posted my kid’s story with PANDAS and you can read it here. The next steps depend on what is best for your family. And every families needs a different. For our family, I didn’t want to go down the IVIG route if I didn’t have to. That is when I started searching for other ways and came across homeopathy, which I can now say has absolutely changed my life, the direction of my life, my outlook on life, and my families life. I am thrilled to say that my kids no longer have any symptoms of PANDAS. No more flares, no more walking on egg shells, no more planning our lives around this horrible disease. We caught their PANDAS fairly early and got them homeopathy care quickly which can make a big difference. It took about 3-4 years to really truly heal them and get them back to themselves. Was it easy? Not always. I won’t lie, there was a lot of ups and downs, a lot of waiting and watching. But they came through…and for that, I am beyond thankful for homeopathy.
If you have any questions about PANDAS or homeopathy, or just need another mom to talk to who knows what its like, my door is always open. If you’d like to talk about starting homeopathic care, book a discovery call.
If you’d like more information about PANS/PANDAS, Aspire.care is a great resource.
