When most people think of “pandas,” they think of fluffy black and white bears. But for those of us familiar with PANDAS syndrome, “pandas” conjures up anything but cute and cuddly thoughts.
My son developed symptoms of PANDAS following a respiratory illness when he was four. His behavior and demeanor changed, and I had no idea why. That’s where the most intense part of his story begins.
What is PANDAS syndrome?
PANDAS: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. In other words, a strep infection causing neurological symptoms.
Kids with PANDAS frequently develop obsessive compulsive disorder, along with a variety of neurological and behavioral disorders. Tics are also a common symptom.
How we got strapped to the big, ugly bear known as PANDAS
In the winter of 2011, our family came down with a respiratory illness that lasted for a long time. I chose to treat the illness at home with herbs.
The illness persisted off an on for over a month, with the cough lasting even longer. I determined we had bronchitis, for which the hallmark is a long-lasting cough after the illness has left. I now realize that at some point, we were probably also battling strep bacteria.
And before you say we would’ve known if it was strep, let me tell you two things:
- your body can be fighting a pathogen without showing outward symptoms. This is a sign of immune dysfunction, and, instead of fighting off the pathogen, your body just holds on to it, allowing it to take root and cause sickness further down the road.
- strep can be a minor part of another overall illness, so the symptoms don’t necessarily reflect strep throat, but strep is part of the equation nonetheless.
I’ll never really know if antibiotics at the time would have made any difference, but I was so scared off from using them at that point, that I didn’t want to consider them. I have read plenty of stories about children who received antibiotics for strep and still developed PANDAS.
Late winter, we finally began to get over the bronchitis. But something had changed. My oldest son had developed motor tics and extremely defiant behavior. I thought it was stress due to the impending birth of his little brother.
Tics, ODD, and SPD, oh my!
The birth of our third son came and went and my son’s behavior did not improve. He had become more and more aggressive. One day at the park, when he gave his brother a bloody nose, a friend said “maybe it’s the wheat,” and advised me to try a gluten-free diet for him.
I took it a step further and removed, first, all refined sugar, then ALL grains, not just gluten. The calming effects were amazing.
I followed the instructions in this post from Heal Thyself for 14 Steps for Healthy Guts and his tics went away. The steps included giving him bone broth, cod liver oil, and fermented foods and drinks every day.
Things were better, but I still had no idea that he was infected with strep bacteria, or how cantankerous it could be. We kept it at bay by being perfect with diet, but if we slipped up, he would have a major behavioral flare… and we’d all be miserable as we rode it out with him.
We were still trying to get a handle on his behavior when my husband got transferred with his job to a town about an hour away. The move took its toll and we ate some convenience foods during the adjustment.
My son was six by this point and his emotions and behavior ruled our home. After much research, I finally put the pieces together that he had Oppositional Defiant Disorder, a disorder which causes sufferers to rebel against all perceived authority and exhibit defiance and extreme rigidity. If something wasn’t going his way, such as my making him get his schoolwork done, he would become angry and just refuse to do what he was told.
I felt powerless to parent my child.
Also around this time, the tics were flared up badly, and he would often make weird heavy breathing sounds or blink excessively. That was one of the scariest things to me, knowing he could not control functions of his body. I eventually figured out that corn caused horribly aggressive behavior.
He also chewed on rubbery and plastic toys or even his own hands, in an effort to sooth his stimulatory needs. I later figured out he was also struggling with sensory processing disorder, and was mostly sensory seeking, which explained his constant need for physical touch and rough housing, which was not always welcomed by his brothers.
Equally disturbing, he had developed symptoms of dyslexia, and would sometimes write his numbers backwards, despite knowing how to write them correctly.
What an ODD episode looks like
Aside from the aggression and defiance, there are physical things that would happen during one of my son’s behavioral flares. His eyes would become very swollen and red, and dark purple circles would form underneath.
He would become angry about something, begin rubbing his eyes, and become visibly frustrated. He would tell me “I’m not going to do that.” Or he would become angry and hit one of his brothers. And his eyes would be purple and puffy and I would know he had eaten something he wasn’t supposed to.
Almost always, he would later admit to sneaking a food he wasn’t allowed to have.
I learned to ride out these episodes, because attempts at discipline were futile. There was a period when I thought if I spanked him, he would snap out of it. Sometimes he retaliated, and I learned that physical discipline did not work for him.
Eventually, it would pass, but only until the next episode came along, at which point, we just had to hold our breath and wait for it to pass again. It was not a fun way to live.
Getting some real answers
Some time after I began putting all the pieces together, we moved back to our previous town and, again, slacked on our diet a bit. In the spring of 2015, we finally paid for a visit with a holistic practitioner.
The practitioner confirmed the behavioral disorders I suspected, but gave us hope that we could heal them. He sent us home with orders for testing, and about six weeks later, we returned to get the results.
Strep bacteria: our son had strep bacteria overgrowth in his gut. On our way home from that visit, I researched all I could about PANDAS and strep bacteria, and it all finally made sense. I knew that the behavioral changes following an illness was no coincidence.
We started an herbal treatment and things got better for about a month before the results started to wane.
The GAPS diet
This past fall, we did the GAPS intro diet. After months of various herbal treatments, my son was better, but I knew more gut healing was in order, and that the GAPS diet fit the bill.
It went wonderfully. It felt good to eat nourishing foods and we all began to feel good and healthy.
He was doing better than ever, but we were still bound to a strict diet. I wanted to try something new, so on a whim, I created a new protocol for him.
Strep and… parasites?
In the midst of all of our health battles, and all the research I’ve done, I’ve read a lot about how parasites are actively involved in disease. Another mom in a Facebook group mentioned the calming effects diatomaceous earth (DE) was having on her son. DE is a natural silica-based product which kills parasites.
I started giving my son a tablespoon everyday. Like the other mom I’d spoken with, I was astounded at the calming effects it seemed to have.
After about a week of DE, I began giving him what I now look back on as a “game changer.” I gave him oregano leaf tincture twice a day. A full dose is 30-40 drops, but I typically start with only a few drops and work up to 20-30 drops for a child, depending on weight. For my younger children, I may never go past 5-10 drops, but for my child who is almost 11, I’ve given a full dropper (30-40 drops).
The first week on oregano, he was tired and a little sick. The second week, he was a new kid.
He began offering to help out around the house. His food allergies seemed gone. The tics were gone, and he was calm and kind.
For good measure, about 10 days after starting the oregano, I put him on an intestinal tract defense tincture, which was, essentially, for killing parasites. I continued all three treatments together for another week.
Related: When Strep Throat is More Than “Just” Strep
UPDATE: a note on dosages
I get more emails and comments asking about dosages than just about anything else. Here is the truth about dosages: I can’t possibly tell you how much of any one supplement to give your child.
Every child is different. Their underlying triggers are different. Some kids battle strep; some kids battle mold; for some it’s epstein barr virus; some have boatloads of parasites or yeast.
Additionally, some children are terribly sensitive and will only tolerate a drop or two of a tincture, while others can tolerate a whole or half dropper.
It’s very important to start very slowly to see how your child tolerates any supplement before upping the dosage, and never start a bunch of supplements all at once because if there’s an adverse reaction, you won’t know which caused it.
Maintaining
Since the miraculous transformation, he’s been able to eat foods he hasn’t had in a long time. He has started creating and maintaining friendships like he’s never been able to before. He’s happy and kind and, at 8, so helpful around the house and with his little brother.
He snuck some soda a few weeks ago, which did set him back, and after enjoying lots of “new” foods, we’ve cleaned up our act a bit, in an effort to give him the best chance at keeping the strep under control.
Recently, our family was hit with a respiratory illness that I suspect strep was involved with, and his tics came back, though the ODD stayed away, hallelujah! I plan to start the three part treatment again this week.
Our journey
A lot of kids who develop PANDAS get really severe OCD and even hallucinate. I think the reason our case was fairly mild is because when my son was infected, we were already eating an organic, clean diet, free of food dyes and other harmful ingredients that can exacerbate the symptoms. We had also ceased vaccinating by that time, which I know helped.
I think the reason the three part cure actually worked for us, is because we had done SO much work prior, mostly through diet, and through the herbal treatments we had done. I believe every little thing we did got us that much closer to healing.
First and foremost, diet is most important. Once diet is under control and gut inflammation has eased, other treatments have a better chance of working well. If you’re looking to get started with healthier eating, read Heal Behavioral Disorders: remove these ingredients from your child’s diet NOW.
Some parents, if they can even get a doctor who will diagnose PANDAS (it’s not exactly main-stream just yet), choose to use long-term antibiotics and other pharmaceuticals to cure the syndrome.
Such was the case with Beth Alison Maloney, the author of Saving Sammy, a book about her son’s battle with, and subsequent curing of PANDAS. It worked for Sammy, and he was cured of PANDAS, without any diet changes even, but I do wonder about the long-term health effects of long-term antibiotic use.
For more information on improving your child’s behavior and quick, easy, healthy meals, click below:
To re-cap, we used the following treatments to heal the symptoms of PANDAS syndrome:
To heal the gut:
To kill pathogens and candida:
biocidin, monolaurin, grapefruit seed extract, and happy belly
To get rid of strep and parasites:
Diatomaceous earth, oregano leaf tincture, and intestinal tract defense
I don’t know what the future holds, but just knowing what it was we were dealing with gives me the knowledge I need to treat it should the need rise again. The most important thing to know is that curing neurological disorders does not begin with a psychiatric medication, but with healing the gut. You know what they say: the gut is the second brain!
UPDATE:
Following the success with these supplements, we added in another supplement to continue keeping symptoms at bay. Read about our holistic approach to oppositional defiant disorder treatment for all the details!
We have also learned that strep is a persistent and cantankerous infection, and we continue to support gut health through a good diet, and use appropriate supplementation as symptoms crop up.
Does your child have PANDAS syndrome? What have you found has helped with symptoms?
I love that boy and I praise God at how far you and he have come.
Thank you for the effort you have put into my grandsons and the rest of us and our health.
Keep up the good work, Jaclyn!
Thank you! Love you. ❤
<3 u back!
On a similar journey here! Confused on how to give oregano orally? Have been rubbing it on him. What do I mix it with so my son can ingest without the discomfort? Also, this article uses the word “cure” but I read that you are still in a cycle of supplements and setbacks. I have yet to hear of anyone actually stepping out of controlling symptoms into a healed state of being. I wonder about the hope of curing our children instead of this life of watching and waiting. Praying with all parents who are struggling.
I don’t understand why you didn’t just give him an antibiotic when you found the strep. You could have replenished the “good” bacteria with probiotics once he completed the treatment. I think it would’ve saved you years of a horrible struggle for your entire family. It’s not like you’re giving him antibiotics every day but they do have their use especially with something as serious as strep.
Hi Cathy. We didn’t know about the strep until years after the fact. Since writing this article, I have found alternatives that work well against strep bacteria. However, since his original infection did not present as a typical strep infection, I had no idea that’s what it was at the time. There is no way of knowing if they would’ve had any long-term benefits had we used antibiotics during the original illness. There are plenty of kids who take antibiotics for strep and still end up with PANDAS.
My son has PANDAS and had chronic strep for years. We had him constantly on antibiotics and it never fully went away until we alternated Goldenseal and Oil of Oregano. Now gone for good! We also did probiotics. It is a highly resistant bacteria, esp. the one that is in the Pneumonia vaccines, which he had when he was little. Then he passed on this lovely infection to his brother, who never had the shot.
Hi,
I believe my daughter has PANDAS, no definite diagnosis yet, but she started with anorexia, then OCD, than tics, bed-wetting, ODD and now rage and psychosis. They are going to do a blood test to test for strep, but will that reveal if she has strep in her gut like your son had? What tests confirmed his condition as they have said her white blood cell count was not elevated and no current infection is suspected. Any help you can provide is much appreciated………she is currently on psych meds unfortunately, as anything you can share would be appreciated.
thanks,
a desperate mom,
Lena
There are two strep blood tests that can be used to test for PANDAS. My son’s strep was found via stool testing.
Check the link at the top of my homepage for my free e-books, one of which is about PANDAS. Hope that helps!
Thank you for sharing your story. My done has Autism and we have always taken a natural approach to treatment, supplements snd special diets. He was also diagnosed with PANS/ PANDAS with 2 triggers mycoplasma and strep. He has a history of candida in the gut. We had to start Antibiotic treatment as flares are happening more often. I am so glad to hear of natural alternatives. I am so excited to start. How long did you use the 3 part treatment ? With a flare did you treat for 3 mths at a time? Or is it taken consistently for longer periods. Thanks AMIE
Hi Amie. Initially, I did the treatment for about 3 weeks, then about a month later, did it for another few weeks. I also used a supplement called “happy” from BioRay kids the second time and the ODD and unreasonable anger had never returned. We’re doing another round now to help with hyperactivity.
Thank you Jaclyn,
Do you believe the protocol you used for your son would work for a kid with PANS, as opposed to PANDAS? Thank you so much for your response!
Oh also, is this the supplement from Bioray called ‘happy’ you mentioned? I can’t find one called, ‘happy’……….
http://www.bioray.com/artemisia-clove/
Hi Lena. Here you are: http://amzn.to/2aPzIA2
🙂
Would you mind telling me what brand of oregano you used, and how you used it?? Thank you for your article!
Hi Lisa. It should be linked in the post. I use one from Gaia herbs, and we put it in a little water. Hope that helps!
omg. That is one that knocked out strep in my son, in capsule form. That stuff works! use it!
Did you use Happy at the same time as oregano?
Yes we have.
Would silver help?
I think so. I’ve used it off and on, and it has helped me with some chronic infections.
Hello
What a great article,thank you,I was wondering if you could give me a idea how much and how long did you treat with the herbal treatment and also oregano leaf tincture?My son who we have battled with the last 8 years or so has a strep overgrowth in his gut too and have not found a cure so far despite the trial of diet etc but have to try again as symptoms are becoming unbearable.Thanks for your home,John from NZ
Hi John. I’m finding I need to keep him on the supplements long-term to continue getting results.
Jaclyn
Hi Jaclyn.Thanks for you reply.Did you find Biocidin helpful? Have you been using this long term? I thought I saw you had used it but can’t see it mentioned now for some reason.Thank you.
Yes, we are using Biocidin at this time as well. Just a couple drops 2-3 times/day.
Thanks for your article I was meant to say.
Hi! Thank you for all this useful information! I have clicked on the links for all of the above supplements… are the capsules all able to be poured out and mixed with water or something so I can give them to my son? Thank you!
Hey Courtney. You can open pretty much any capsule to mix into something for younger kiddos, though I haven’t done that with these, so I can’t attest to the taste!
Hi! Thank you for all this useful information! I have clicked on the links for all of the above supplements… are the capsules all able to be poured out and mixed with water or something so I can give them to my son? Thank you!
Would Oregano oil work or just the tincture?
I don’t know, Anne. I haven’t tried it, but it’s definitely not the same thing, and I don’t recommend routinely taking essential oils internally.
Hi; I have a couple questions regarding the protocol you did. The Oregano leaf tincture; how did you give that? My son is 3.5 so I’m having great difficulties in getting him to take all the icky tasting herbs/supps.
I just put extracts in a little water, but for strong tasting herbs, I’ve been known to mix with some raw honey for my little ones.
You can put herbal tinctures into empty capsules if your child takes capsules.
I’m in tears. I’ve battled my daughter for years and always blamed myself. This all makes sense.
Can you detail the protocol more. After reading comments I’m confused. Am I to use the oil tinctures or the pills? How long? And how in the world do you get them to take it. Is it ok to put in a smoothie. I’m relived and overwhelmed all at the same time. We’ve already taken gluten and dairy out a year ago
She also had a sever reaction to amoxicillin. Any help would be so appreciated
We used a tincture called Oregano Spirits and put the drops in a little water. We did this off and on for several months and still go back to it on occasion if there is a flare.
hi, my child was diagnosed with PANDAS and I want to try your protocal. I just need more clarification on the doses. The oregino; how many drops of the oregino tincture did you put in juice? The DE powder you gave him right away 1 tablespoon or you slowly went up in amount? Does the child need to drink lots of water when taking this powder? (because I know that the bentinote powder you need ti drink lots of water and I am wonering if this one you need too.) How many exact drops did you give from the Intestinal Tract Defense.? For what reason did you also give this? The DE powder is not strong enough?
Thank you so much!
Hi Maria. Everything we did, we started slowly with small amounts and worked our way up, however, I cannot tell you what doses might be appropriate for your child, as this is just what worked for us. 🙂 One should drink lots of water when consuming DE, yes.
How do you use diamatacious earth? Like how much and do you mix it with something?
When I’m using DE, I’ll mix a teaspoon up to a tablespoon (though generally not that much for a child) in a little water, then follow up with a full glass of water.
How long do you continue the DE? Does your son continue to take it?
We only do about two weeks at a time and are not currently taking it.
How much oregano extract did you give? You may have said but I can’t find it ?.
I think my son has Pandas and I am looking for a physician to test him. Can you tell me what stool test you used to detect the strep in his gut?
Thanks!
It was from Genova Diagnostics.
Hello, Thanks so much for all your information. You are a godsend.xxx We are in a remote location and do not have accessibility to all these tinctures at this moment. Working on it but could take weeks. For oregano tincture I have oil of oregano readily available would I be able to give 1 drop of this in the meantime? thanks so much xxx
Hi Belynda. I don’t recommend internal essential oil usage in general. I have used it as part of a combination tincture, however, but not for extended periods of time.
As I read this, everything you described felt like you were describing my son. He will be 6 in April and has an diagnosis of mood disorder. I have always felt like he had Pandas since he was 3. He had hand foot and mouth otherwise know as coxsackie, but he had to be hospitalized. Looking back on it I think it was impetigo a skin version of strep. We have seen problems ever since. This post gave some much help and hope for his future.
Hi Jessica! I’m glad this might give you a place to start and have hope for your son!
Hello! I am crying re-reading this blog post. I first found it two weeks ago in my never-ending quest to heal my son. He has been on a GAPS/paleo, corn-, MSG-, and sugar-free diet since age 4 . At first he was markedly improved but then slowly he progressively got worse in every way. I have tried every supplement in the book, done thousands of dollars in testing (23&me, genetic genie, methylation profiles, toxicity profiles, organic acids, hair minerals, regular blood panels, etc), seen therapists, seen psychiatrists, consulted multiple experts and doctors locally and remotely, and have had NOTHING work until now. Last week I started the Oregano Oil and already my 7-year old son with severe ADHD and ODD (who had been in suicidal screaming rages at school just the other week) is remarkably calmer and less defiant. It’s incredible and I am cautiously optimistic for the first time in years about a possible recovery. I cannot thank you enough for putting this information out into the world. I will continue to follow your guidelines and I’m just so grateful. Thank you.
Wow Jennifer! Thank you so much for sharing. Praying for continued success for your son.
This is interesting. You never did clarify in your post or in your replies to others (who specifically ask for the information) about what dosage of oregano oil you used for your son. It sort of seems like you are avoiding the question, or maybe you just aren’t sure… Is there any reason you do not want to provide the answer? What dosage did you use, and for how long? Obviously everyone’s child is different but maybe it would be helpful for people to have a sort of baseline idea of what worked for someone else.
It’s not that I’m avoiding the question, it’s just that there are too many variables, and I’m not legally allowed to “prescribe” dosages. The dosage I’ve given my son varies. Sometimes he tolerates only a few drops, and sometimes I give him a full dropper more than once in a day. It’s very important to start very slowly to see how your child tolerates any supplement, but the end goal should be to work up to a therapeutic dosage. What that is for each individual, however, will differ, especially as the dosage on the bottle is probably designed for an adult.
Hi! How do you test for PANDAS? How do you find out if your kid has it or not? What are the steps? New to this…!!
Hi Nana. You can ask to have strep titers run on the child, though there can be any number of infections that trigger the symptoms, so even without positive strep titers, it can still be PANDAS. The best bet is to find a PANDAS specialist to give a clinical diagnosis. You can search for one near you here: http://www.pandasnetwork.org/research-resources/us-providers/
So sorry to see this happening to children….. I do hope from your article there will be more of a push to explore how our American diet is killing us and that we at least have people researching the holistic approach to all the chemicals and
drugs that are pushed on us. Until the medical practice does more of what your article proves can happen I am very thankful that you are out there helping other families with this terrible attack on their children
Thanks so much Katlee!
Hi , I have twins with Autism that are already nineteen years old but I have purchased everything listed on your protocol. I know you do not feel comfortable suggesting doses after reading through all the comments but can you please let me know How long you should stay on when first starting ? Is it generally two weeks on and so many weeks off?
One more question please…when you are eventually wanting to just stay on something as a maintenance dose…what product is the most important to stay on for maintenance?
Thank you , I just truly wish Pandas was more known about when my kids were younger as everything was always blamed on there Autism
Thanks so much for any information
Hi Cheryl, everything will just be very individual for what is working. Generally, the body should get a break here and there from intensive regimens, but sometimes if you stop too soon, symptoms will return, so you’ll just have to experiment.
The best help we have found after doing all the healing protocols is a probiotic called Bioflor 7. This active probiotic was developed by a doctor for kids with pandas. If my daughter gets exposed to strep her tics, ocd, etc start up again. But within 2.5 days of using this her tics settle and then her other symptoms it’s a game changer. We also give her turmeric, omega 3 and magnesium byglicinate daily to help support her system. After years of struggling my daughter is doing so well.
Thanks for sharing those tips!