*I am not a doctor and this post is not meant to give medical advice. I’m just a mom who has had to become a medical advocate for my child, who has learned a lot and started him on a path to healing, and who would like to share what I’ve learned to help other suffering families.
The most frequent question I receive from parents who are finding my family’s story about PANS/PANDAS and Lyme is “How do I get my child tested/diagnosed/treated for P/P?” It seems like a really simple question, but the answer is incredibly complicated. So I thought the answer deserved its own blog post because it is multi-layered.
You’ve likely found this post because you already are following along with my family’s story (or were already a blog reader) and want to know more, OR because you’re searching for answers yourself because you have a child who suddenly started exhibiting very extreme behaviors like anxiety, rage, OCD, food restrictions, and more. That was me just 5 months ago, although it feels like years worth of developments, knowledge, and treatment has occurred during that short time. It took me almost 2 months to realize that Charlie’s behaviors were caused by PANS/PANDAS — that is a really long time when your child is in pain, depressed, suicidal, raging (and I mean RAGING, like they are possessed by demons), stuck in a constant cycle of compulsive thoughts and obsessive behaviors (OCD), having sleep disturbances and food restrictions (like barely eating, only eating very specific things, etc.) I recognized the OCD right away and he was quick to receive a diagnosis of OCD. Unfortunately, our pediatrician and behavioral therapist did not explore anything further than that — no questions regarding other behaviors, recent illness, or anything else. It took Charlie deteriorating more and more for me to be certain there was more wrong and to push for answers. Those two months were critical and had he been treated for PANS/PANDAS earlier things might not have gotten so bad for him.
So if you’re searching for answers because of your kiddo’s sudden unusual behavior (or suddenly increased behavior), you can compare what you’re seeing with these criteria for PANS/PANDAS:
- Acute onset of OCD symptoms and/or,
- Severe eating restrictions (or acts like swallowing is suddenly really hard for them), PLUS ANY TWO OF THE FOLLOWING:
- Separation anxiety, panic, other forms of anxiety (school refusal or needing to constantly be with mom or not allowing one parent to do anything for them are some ways this presents)
- Behavioral regression: Kids suddenly acting much younger than they should for their age, such as reverting to baby talk.
- Emotional lability: These children can be severely depressed, even suicidal.
- Irritability, aggression, rages and /or severely oppositional behaviors.
- Deterioration in school performance: Sudden decline in math and/or reading competence, memory and concentration; increase in hyperactivity; inability to engage in activities like reading or writing that they used to enjoy or excel in.
- Motor or sensory abnormalities: Their handwriting and drawing deteriorates dramatically (also linked to regression), and they may be distressed by noise or light; may present with motor or vocal tics.
- Somatic symptoms: These include sleep disturbances, bedwetting and other changes in urinary frequency or intensity.
Charlie presented with both 1 and 2, plus all 7 of the criteria below. Quincy (my youngest son who is 3, almost 4) started showing a sudden OCD onset after a virus recently and he is also presenting with both 1 and 2, plus baby talk (or going non-verbal), sleep disturbances, and tics as well as extreme separation anxiety where he cannot be away from me without emotional meltdowns. He does still enjoy going to school.
So let’s say your child does meet the above criteria and you strongly suspect they are dealing with PANS/PANDAS –what do you do next? Where do you start?
TESTING AND GETTING A DIAGNOSIS
PANS/PANDAS is a clinical diagnosis based on the collection of signs, symptoms, medical history, and laboratory findings that cannot be explained by any other neurological or medical disorders. Currently, there is not a 100% definitive test for PANDAS or PANS, although a test called the Cunningham Panel* can provide more aid in diagnosing P/P — but it is very expensive and is not covered by insurance. Talk to your pediatrician right away and request bloodwork. Many (most?) pediatricians still don’t know much about P/P and may not agree to testing, but that is a good place to start. Some of the bloodwork and testing you would want to request is:
- IgE Level
- IgA, IgM,
- IgG (subclass 1, 2, 3, 4)
- Vitamin D
- Strep throat culture, 48 hour culture or perianal culture
- Antistreptolysin O (ASO)
- Anti dNase B
- Lyme Disease and co-infections (Babesia, Bartonella, etc)
- Mycoplasma Pneumoniae IgA & IgM
- Pneumococcal Antibody Titers
- Epstein Barr Virus Panel
- Coxsackie A & B Titers
- HHV-6 Titers
- Cunningham Panel* – autoimmune autoantibody levels: Dopamine D1 receptor, Dopamine D2L receptor, Lysoganglioside GM1, Tubulin, & CaM Kinase II.
Once the autoimmune switch has been flipped, other things can also trigger or worsen symptoms of P/P including allergies, mold exposure, yeast overgrowth, stress, chlorine (yep, as in from swimming in a pool), exposure to illness (just being around someone who is sick), chemicals and fragrances, a loose tooth or dental work, flouride, and dietary triggers (like gluten, artificial colors/food dyes, and other inflammatory foods like dairy, soy, corn, and sugar).
My child’s pediatrician is skeptical about PANS/PANDAS or won’t test or diagnose, or is referring me to an infectious disease specialist. What do I do now?
FINDING A PANS/PANDAS PRACTITIONER
If you suspect PANS/PANDAS in your child, you need to find a practitioner who understands and treats the condition. A great resource is the PANDAS Network US Providers Database, where you can search for a provider near you. You may have to travel and there may be a long wait. In the next section I’ll share what we did while we waited to see our PANS/PANDAS specialist (who lucky for us is also a Lyme Literate MD and is local).
Another great resource for finding a P/P provider is Facebook. There are some fantastic support groups for PANS/PANDAS Parents, filled with parents who have been or currently are where you are. They have already done the research, tried different treatments, and seen many physicians. They got me through those two months before we saw a doctor who took Charlie’s illness and my P/P suspicious seriously. There are sometimes even groups that are for your specific area, which is wonderful for doctor referrals. A few groups I have found to be the most helpful are:
I highly recommend joining all three of the above (if you are in the Midwest area then the Ohio group is really helpful as well, otherwise look for a P/P group in your geographical area). There are others but a couple groups, like PANDAS PARENTS, are really large and I found the amount of posts and opinions overwhelming. I got the best overall info from the first group mentioned above, the most specific help and doctor recommendations from my local group, and discovered another option of treating entirely with the Homeopathy group. In fact, that group is run by a P/P Homeopathic practice called Resilience Homeopathy who treat remotely based on symptoms and don’t need extensive bloodwork or invasive medical procedures in order to heal the P/P susceptibility (more on this below). Quincy is starting with them next week and we plan to also have Charlie and myself treated by them down the road (Charlie is making great strides with his LLMD who we love and I’m always at the bottom of the list for medical care). I’ll be sharing more about the Homeopathic approach and if it works for us as we learn more and go through treatment.
I found a PANS/PANDAS doctor for my kiddo but there is a wait and life is currently hell. Is there anything I can do while we wait?
TRIAGING AT HOME WHILE YOU WAIT TO SEE A DOCTOR
Again, I am not a doctor, just a PANS/PANDAS mom who has been there, who has tried things, and who has done a ton of research. I have also since seen a good doctor who thought I did a lot of things right and was already doing things she would have recommended to start. I’m sharing my experience only, not giving medical advice. Ok, with that out of the way, here are some things you can start with at home to triage while you wait to be seen by a P/P doctor.
- Do a trial of ibuprofen: get the ibuprofen appropriate for your child depending on your child’s age and/or ability to take pills. For Charlie, he can swallow pills and for his age/weight he could have 220 mg of ibuprofen per dose. So I gave him regular (not children’s) ibuprofen in pill form every 6-8 hours, around the clock, for an entire week. I learned this trick from other mothers in the FB groups. If your child is dealing with PANS (which causes inflammation in the brain) then the ibuprofen treats that inflammation and you may see temporary improvement of PANS symptoms. I saw a change in Charlie within 30 minutes of taking his first dose! That confirmed to me what I was already pretty sure of: that he had PANS/PANDAS. We ended up switching him to Naproxen (Aleve) because you only have to give it 2 times a day instead of every 6-8 hours and that worked well for us. He is still on this, which isn’t ideal long term but is necessary to keep his inflammation down until he progresses to the point where we can take him off (and this is all done under our doctor’s care). Tip: get dye-free ibuprofen or naproxen (you have to get dye-free naproxen by prescription, as they don’t sell it over the counter).
- Remove inflammatory foods from their diet, especially gluten. Some of these kids have extreme food avoidance and barely eat any foods. If all your kiddo will eat is cereal or pancakes, try for a gluten-free kind if you can. But if you can’t, any food is better than no food that has inflammatory ingredients. For a solid month all Charlie would eat was chocolate chip pancakes. I made them at home with a gluten-free mix, but there was still dairy and sugar. I did my best but at the end of the day his eating was more important than anything else.
- Ask your pediatrician to run labs to expedite the process while you wait to be seen by specialist. I begged my son’s pediatrician to run tests (those I mentioned above which I learned about from moms in the FB groups). When I gave him the list of labs I wanted he told me that he didn’t think they were all a good idea. Specifically he said that the Lyme tests are notoriously unreliable and some of the others he didn’t know how to interpret and the viral ones wouldn’t make a difference in how he could treat Charlie. But I told him that we were waiting to see a specialist and that I wouldn’t need him to interpret them, so he agreed. When Charlie’s labs came back positive for mycoplasma (walking pneumonia) and Lyme, he suspected both were false positives (which I still don’t understand, but I digress…). I then begged him for antibiotics based on those labs. He agreed to a 2 week course of Azithromycin (which isn’t nearly long enough but did let me see how Charlie would respond to antibiotics). He improved drastically within 1-2 days! And then as soon as the course was over he regressed again. But that in itself gave me answers and confidence that I was on the right track. And shortly after we saw our new doctor who prescribed a higher dose of the same antibiotic and for a prolonged period of time (we are still taking it.)
- Try to resist buying a million random supplements until you are seen by your P/P specialist. If you join the groups you’ll see all kinds of things being recommended. You’ll spend a fortune before you start and you won’t know what works and what doesn’t. It is hard not to try to throw whatever you can at the problem to get some relief but try to resist. If you do give a multivitamin or supplement (and usually Vitamin D, B6, Zinc, and Magnesium are the ones PANS kids may be deficient in) make sure it is a high quality one without gluten, fillers, dyes, etc.
- Consider checking your home for mold. PANS/PANDAS can be triggered by environmental toxicity, and mold is a big one. If you live in an older home or know you have had a leak or water damage, you should definitely check your home for mold. Even if you have a brand new home or have never seen visible mold in your home, you could have mold. Two easy ways you can rule mold out as a factor are doing a VCS test online and doing an at-home air test for mold. The VCS test (or Visual Contrast Sensitivity Test) is free or very low cost ($10 for one, $25 for three) and a positive result means you should pursue mold toxicity further. A negative test means you may be able to rule it out if you haven’t seen evidence of mold. If you would like to rule out mold by doing a do-it-yourself test, you can go about it one of two ways: you can test the air (which gives you an idea of present or current mold in your air) or test the dust (which gives you an idea of past mold presence) in your home. We did both the VCS test (Charlie and I both passed) as well as the Immunolytics air mold tests (which also came back within normal range). I really liked the ease of use and thorough lab analysis of Immunolytics, and it was a much more affordable option than the dust test or having a professional mold expert out to our home. I plan to do an entire post on testing with Immunolytics because I think you’ll find it really helpful.
Also, once you start treatment and are killing the bugs (whether it be an infection, virus, parasite, etc) you need to detox to remove the dead bugs from your system otherwise you could feel worse rather than better (it’s called a Herxeimer Reaction). While our bodies know how to detox on their own, illness, immune disfunction, genetic mutations (like MTHFR) and other things can cause our detox pathways to be blocked and not work as efficiently as our bodies need. So once you kill the bugs you need to use binders (we use this and this) to attach to the dead bugs and then you need to get rid of them through bowel movements and sweating. This is why infrared saunas are so popular. But if you don’t have access to a sauna you can still drink a lot of water and take epsom salt or magnesium baths. Also, we recently got an IonCleanse Footbath and have seen major improvement in Charlie each day following a footbath (he does them 3x a week). I share lots about our footbath on IG as well and once we have it longer I’ll post about it more here too.
Will my child ever be cured of PANS/PANDAS? Is it necessary to run a million tests and take a ton of pills to treat it?
TAKING A HOMEOPATHIC APPROACH
PANS/PANDAS is an autoimmune illness, and like all autoimmune diseases, once the door has been opened to immune disfunction it can always be opened again. Just like I have Hashimoto’s and can always have a flare up, PANS/PANDAS can always flare when exposed to a new illness, allergy, or other immune trigger. So using Charlie as an example, even if we are able to cure his chronic Lyme (which is a big challenge and long road in itself) we still could have PANS/PANDAS flares anytime he is around an illness. And as long as PANS/PANDAS is a factor, so is OCD.
But in all of my searching and researching I have come across an approach that many parents of PANS/PANDAS kiddos are swearing by as a way to heal entirely of P/P: homeopathy. According to the American Institute of Homeopathy, “Homeopathy, or Homeopathic Medicine, is the practice of medicine that embraces a holistic, natural approach to the treatment of the sick. Homeopathy is holistic because it treats the person as a whole, rather than focusing on a diseased part or a labeled sickness. Homeopathy is natural because its remedies are produced according to the U.S. FDA-recognized Homeopathic Pharmacopoeia of the United States from natural sources, whether vegetable, mineral, or animal in nature.”
Being entirely honest, this is a bit more of a crunchy approach than I would have ever considered before this whole PANS/PANDAS Lyme nightmare my family has been living through for the last 6 months. However, after feeling pretty dismissed and abandoned by traditional western medicine regarding my own autoimmune illness as well as Charlie’s P/P and Lyme, and after having my eyes opened to so many things that were deemed as “safe” by my past doctors or the FDA or the AMA that turned out to be making me or my kids sick — from my copper IUD to ingredients in our food, skincare products, or household environment — I have really grown in my openness to trying more natural remedies and approaches to healing. I am still in the early stages of learning about homeopathy but have found a very informative group of practitioners who exclusively treat PANS/PANDAS (they have an amazing FB support group with video units that teach you all about homeopathy, how it works, and how it can heal P/P). They are based in San Diego but you can do appointments remotely via video or phone and I have an appointment this week for Quincy. Because we had already started treating Charlie with our LLMD and P/P specialists and are seeing a lot of progress there, I am continuing his treatment with them and will add in homeopathy once we are done adding things to his current treatment plan. But for Quincy, who is too young to really cooperate with testing and taking lots of meds or supplements, I decided to start with homeopathy because his only real symptoms right now are OCD, some separation anxiety, sleep disturbances, and some food avoidance. The good thing about homeopathy is that the underlying cause or trigger of PANS/PANDAS doesn’t actually matter, so you don’t have to do all of that detective work to figure it out. Homeopathy looks at the symptoms the person is having and treats based on that. I feel like it is an ideal way to treat him at this time. And since pretty much all PANS/PANDAS treatment is out of pocket anyways, treating with a homeopath vs. an integrative MD doesn’t matter financially. In fact, since we won’t have to do a bunch of labs or pay for a ton of supplements it is a more affordable option. I can’t speak from experience to its effectiveness yet, but I will be sure to share more as we go down that path and I learn more and see whether it helps Quincy.
I hope this post was helpful to those of you desperately googling about how to help your child. I intend to compile and share all I have learned in one spot here on my blog so that it might be a comprehensive resource for other struggling families. As I share more I will make sure it can all be found under a PANS/PANDAS menu header, including treatments that have worked, products that have been helpful, testing we used, etc. You can also find more on my IG feed — I have saved stories in my profile for PANS/PANDAS, Quincy’s OCD (with video showing some of his behaviors), and Healing Charlie for info on both P/P and Lyme.
If you’ve learned anything from any of my posts I would love for you to share on social media, especially FB, IG, and Pinterest. The more these posts are shared, the more other parents will see them and find answers. If anything good can come from this I hope our story can raise awareness and help other families. And if you have personally been affected by PANS/PANDAS (or Lyme) yourself, I’d love for you to share your own story in the comments below. It helps to see we aren’t alone.
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