Where every Family matters!
Past issuesFeeds Facebook Twitter Contact

Understanding ‘Pandas’

Share on TwitterTweet
Share on Facebook
Subscribe

Get our stories in your inbox, free.

Like New York Parenting on Facebook.

Medicine is supposed to be an ever-evolving practice where research scientists and doctors work to discover new conditions and eradicate new diseases. However, sometimes resistance to something new by some in the medical community comes at the expense of health and healing. This is when as parents we must become our children’s first primary care physician and stand up to be our child’s best health advocate. Many times doctors are reluctant to think outside a very narrow paradigm when it comes to something that is new.

This is certainly the case with a relatively misunderstood and often misdiagnosed condition that occurs in children who are suffering from pediatric autoimmune neuropsychiatric disorder associated with a streptococcal infection, often referred to as Pandas. There is now a growing body of concrete evidence pointing to this disorder, and while it is not rare, it is rarely diagnosed, with many doctors still refusing to acknowledge its possibility in their patients.

What is Pandas? It is an autoimmune disorder that now appears to be affecting 1 out of 200 children. It is often hastily misdiagnosed as a tic disorder, Tourette’s syndrome, or obsessive-compulsive disorder. It describes a sudden childhood onset of obsessive-compulsive behaviors, emotional lability, or “Tourette-like” motor tic symptoms that wax and wane, but whose onset or worsening appears to be linked to group A beta-hemolytic streptococcal infection. While in most cases it is triggered by a strep infection, many times the initial triggering infection is something else or goes unidentified. The disorder is what happens when a child’s immune system does not respond appropriately to an infection. It is basically a colossal failure of the immune system.

It is important to reiterate that the dominant infection connected to the disorder is streptococcus; however, it appears that infections such as Coxsackie A and B, pneumonia, flu, Lyme disease, and mycoplasma can also be the trigger. There is currently a much greater understanding about how many different bacterial and viral infections can trigger the condition, which causes inflammation in parts of the brain responsible for movement control, obsessive thoughts, compulsive behaviors, and extreme emotional and behavioral ups and downs. The symptoms are varied, but often include motor tics, eye blinking and or rolling, vocal tics, obsessive-compulsive disorder, symptoms of anxiety often over separation, compulsions, emotional lability, irritability, sudden unexplainable rages, fight or flight behaviors, personality changes, age-inappropriate behaviors particularly regressive bedtime fears or rituals, oppositional defiant disorder, tactile and sensory defensiveness, fidgetiness or inability to focus, marked deterioration in handwriting or math skills, daytime urinary frequency, nighttime bed wetting, and anorexia (particularly fear of choking, contamination fears, or fear of throwing up).

Many children will exhibit just one or a few of these symptoms, and it is not necessary to the diagnosis that a child exhibit all of them. Many times these symptoms will come and go over a period of time, causing parents to believe that the condition is gone — only to return with a significantly higher intensity. Up to this point treatment has been limited to the use of long-term antibiotics (two months to several years), intravenous immunoglobulin treatment, or plasmaphoresis. Many times this treatment has been ineffective, leaving children struggling with this condition for years.

Recently the use of all natural essential oils as an effective, alternative, and safe approach has gained attention and has shown remarkable results, with many claiming complete and total recovery. While this a natural and alternative approach and not a traditional pharmaceutical treatment, many hospitals and integrated doctors are turning their attention to essential oils because of their keen abilities. Numerous peer-reviewed medical journals and published studies both in America and abroad show that essential oils contain properties that are highly anti-bacterial, anti-viral, and anti-inflammatory. They also have the ability to address issues of cellular malfunction and oxidative stress. One key to their remarkable success is their ability to cross the blood barrier, making essential oils effective at addressing the cause and the effect of the disorder in a manner that is safe and natural.

As devastating as it can be, Pandas does not have to be a permanent condition. The key is recognizing it and treating it correctly. As parents, we must listen to that voice inside of us, and if your instinct is telling you something else is wrong with your child, you need to pursue it despite what one doctor may be advising you. Do not stop until you get an answer, keep pushing. It is important that you understand that all neurological abnormalities may not be what they appear to be, but instead be something more easily treated. Any child who presents a sudden onset of these symptoms should be evaluated for Pandas. If your child suddenly starts to have eye twitching or blinking, head shaking, obsessive-compulsive disorder, or behavioral abnormalities, it is wise to look for a recent strep infection. Lastly, any child who has been diagnosed as having Tourette’s syndrome, motor tics, or even obsessive-compulsive disorder deserves a Pandas workup.

The key to helping children with Pandas is awareness of the disorder and a willingness to do whatever it takes to get them to full recovery, even if that means opening up your mind to an alternative form of treatment.

William Cook is the parent of a child who was diagnosed with Pandas, and he and his wife Joann know firsthand the struggles it presents. After traditional medicine didn’t work, they turned to essential oils as an alternative, and their child experienced a complete recovery. The Cooks then formed Pandas Hope For Healing, a free service to help other children experience the benefits of using essential oils. The Cooks work with many families and guide them through the process of using essential oils effectively. Their website is www.pandashopeforhealing.com. They live on Long Island.

Updated 6:39 pm, October 28, 2016
Top stories:
Share on TwitterTweet
Share on Facebook
Subscribe

Get our stories in your inbox, free.

Like New York Parenting on Facebook.

Reader feedback

Todd P. from Cincinnati says:
Will has been a more than helpful in getting me to understand my son's condition, and explaining exactly what needs to be done to fix it. It's now our fourth week using the oil program. He even talked me through the order process, and explained what needed to be done. We caught the signs early (less than 30 days) and now 30 days into the program I rarely see my son roll his eyes or blink. I am confident by week 6 it will be gone completely.

Thanks Will for caring and helping !!
Dec. 4, 2014, 7:14 pm
Lori from Rhode Island says:
Well written article. PANDAS is now called PANS, as it is contributed to nearly any infection, bacterial or viral. As long as the onset of symptoms were sudden and abrupt, that is classified as PANS. Oils are very helpful for most kids, especially those with physical symptoms. Emotional symptoms are the toughest to treat and last the longest. Hopefully we can bring awareness to this disease by spreading around this article and ones like it.
Dec. 4, 2014, 9:07 pm
Karrie from Michigan says:
What are the most effective essential oils for Pandas?
Dec. 5, 2014, 7:57 am
Shayna Murray from Canada says:
PLEASE do not believe that essentials oils alone can heal your PANDAS child. They simply cannot. Seek out the proper medical help - which is often not easy but I urge you to do it.
Dec. 5, 2014, 4:01 pm
R Jalinos from Locust Valley says:
PLEASE do not disregard the powerful effect quality oils can have in aiding the body to heal. I'm not totally disregarding the Western approach to medicine, however I have seen many people including myself respond positively to a holistic approach without the side effect of "traditional" medicine. We should educate ourselves to ALL options available...
Dec. 5, 2014, 4:13 pm
Shayna from Canadda says:
Do you have a child with PANDAS? I do. This is bunk. BTW we do use oils - as a compliment to medicine. You should follow the links at the end of the article and sign up! Then come back and share the marketing scheme with the rest of us. Giving false hope to families in so much pain is shameful. And doing it to make money should be criminal.
Dec. 5, 2014, 4:28 pm
Dr. Mike from Kings Park, NY says:
According to the JAMA, medical doctors are responsible for 225,000 deaths per year in the United States. However, I can't seem to find any statistical deaths from essential oils. If you ask me, what is criminal is how much money the medical profession makes considering how many people are killed each year from medically caused deaths (iatrogenic causes). Nobody is saying not to discredit the medical profession for certain healthcare needs. One just needs to be proactive about their own health and essential oil use is a safe and effective way to care for yourself.
Dec. 5, 2014, 7:09 pm
Beth B. from Midwest says:
This is a fairly good article until I got to the part about essential oils. I agree with many of the comments to this article in the publication that the emphasis put on essential oils as the best treatment for pandas is an irresponsible claim. I feel that the people selling their essential oils are making pandas be their cash cow. Randomized, double-blind, placebo-controlled studies with essential oils and pandas need to be done before people can make these claims. Many people are doing a lot of hard work to get pandas understood and accepted in the medical system.....this kind of bunk is not helping the cause. Feel free to use and buy essential oils all you want, but they should not be considered the main treatment for pandas. Essential oils can be mentioned as an adjunct to medical therapy like nutrition, vitamins, supplements, natural inflammatories, etc. but as the main treatment it screams quackery.
Dec. 5, 2014, 8:12 pm
William Cook from Long Island, NY says:
To the two people on here who interjected such negativity. You are welcome to believe what you want, but I wrotet his article and this my truth. My son suffered for two years with PANDAS on three different medicines at the same time. We tried at least 4 different antibiotics and were headed for IVIG which is very risky and has not been proven to help permanently. We began to use essential oils not haphazardly as a hobby but with specific guidance and with a specific regimen and application process for our sons condition and within 4 months we had our child back. Please don't tell me they do not work, 7000 peer reviewed and published medical studies prove you wrong. I don't need a double blind study because my son is completely and totally recovered. By the way there are NO double blind studies showing that antibiotics work to cure PANDAS, no double blind studies that IVIG works to bring about recovery in PANDAS and yet you advocate for that treatment. For you to make such blanket negative remarks is very wrong because you have not walked where we have walked and do not know what we have experienced. We do not sell essential oils but we have helped over 100 children recover from PANDAS, using essential oils and I will help any one get to where we are, and I do not charge anything for my time. Open your mind... negativity and disbelief will rob you from experiencing healing. I would ask you to bring something positive to this discussion. People have the right to hope!
Dec. 5, 2014, 9:13 pm
christina from montreal, Canada says:
Need help with oil protocol for 17yr old with pandas movements.
Feb. 10, 2015, 8:37 pm
Eva Weiss from Brooklyn says:
I'll tell you what snake oil is. Snake oil is the mental health industry that is perfectly willing to empty parent's bank accounts while providing no real help to the PANDAS child and denying PANDAS exists. My son has had PANDAS for over 4 years and it has robbed him of a normal childhood. Dare I say a childhood. The entire mental health profession and the numerous ignorant pediatricians should be condemned for providing therapy and no real help for an infection/autoimmune condition that needs real medicine and real answers. We are pursing conventional medicine now after my son suffering for many years and it is not working 100%. But, we are grateful that we finally found a pediatrician that knows about PANDAS and is willing to treat it. I am completely willing to try essential oils for my son. I trust that some people have had a positive experience with essential oils and I am praying it will help him. Unlike psychiatric drugs and years of antibiotics at least I know it won't hurt him. Shame on the medical establishment for not looking for real ways to help children like my son and Bravo! to people looking outside the box for answers and never giving up on their child.
June 11, 2015, 11:18 am
Maria Vorwerk from Santiago de Chile says:
Need help with essential oils protocol for an 11 yrs old boy with 2,5 years of PANDAS. Thank you for helping.

My email adress: memevor@gmail.com
June 21, 2015, 1:47 pm
Carolyn Rosas from Long Island, NY says:
God Bless the Cook family. They are honest and caring people. I know them and their son Giovanni and he is doing just fine on the essential oils. They don't take any money for this. They are helping people out of the goodness of their heart because they believe that these oils will help.
Oct. 7, 2015, 8:17 pm
Ruth from Ontario, California USA says:
I am looking for help for myself. As soon as I heard about Pandas I felt that this is something I suffer from myself. I am really desperate. Can you help adults too? I am very sorry that you have to deal with such negativity on your site. I stopped taking anti-biotics for the most part, several years due to the sever illnes I got from taking them. It is well known now that with the extreme resistance of some bacteria to anti-biotics that herbs and essential oils are the only things left that DO work against such infections.
Aug. 24, 2016, 10:29 am
Aludi says:
Need help with essential oils protocol for 3 years OLD CHILD WITH PANDAS. Thank you for helping.

My email adress: almeidaheylan@yahoo.es
Aug. 26, 2016, 9:49 am
Katie from Kings Park, NY says:
I would like any input for an essential oil protocol for a 13 yr old young lady with PANS. Any help would be appreciated. mrsoconnor8913@gmail.com
Nov. 3, 2016, 12:58 pm
Joy from Boston MA. says:
A pretty good article that raises some awareness of the disorder, but leaves out much. It is two years old now though, so that is understandable. Through out the article the acronym of PANDAS should be capitalized. Also, the acronym PANS is not used at all to identify what is now the umbrella term of this syndrome. PANDAS falls under PANS. PANS is what it is called when an infection other than strep is the trigger. Traditional treatments are not mentioned. For many traditional treatments do work. For some it is a combo of both traditional and herbal. To not educate on both methods in this article, and to not use the PANS acronym, leaves out much.
Dec. 31, 2016, 12:04 pm
Joy Catron from Boston MA says:
So, I was a follower on the facebook page of this author, which is called "PANDAS Hope for Healing", but because I commented on this article on his page I have been attacked and banned. Simply because I said that the acronym PANDAS should be capitalized in the article and because I said that PANS was not mentioned by name and should have been. Then the rude comments started. I find it so funny that grown adults can not have civilized conversations and that if someone gives constructive criticism or points out something they get banned. PANDAS and PANS are difficult to deal with, difficult to dx, difficult to get the right treatment etc. To educate others on these syndromes is important, and to not give full info or to give wrong info is misleading and wrong. So sad that some are so easily offended and act like two year olds. Check out his website, PANDAS hope for healing. Where he clearly says he is not a doctor and can not diagnose or treat, yet he gives (for a fee) guidance on how to use essential oils etc to heal PANDAS (and he actually does mention PANS on the website, though not in detail)...that seems to be pretty much treating to me. Telling someone what meds to take for a fee seems to be treating to me. Hmmm.
Dec. 31, 2016, 1 pm
Amy from Virginia says:
I spoke with Mr. Cook today. I am very eager to start essential oils with my son. Read the Bible if you don't believe in the healing of essential oils.

There is hope. I have hope.
Aug. 24, 11:38 pm

Enter your comment below

By submitting this comment, you agree to the following terms:

You agree that you, and not NYParenting.com or its affiliates, are fully responsible for the content that you post. You agree not to post any abusive, obscene, vulgar, slanderous, hateful, threatening or sexually-oriented material or any material that may violate applicable law; doing so may lead to the removal of your post and to your being permanently banned from posting to the site. You grant to NYParenting.com the royalty-free, irrevocable, perpetual and fully sublicensable license to use, reproduce, modify, adapt, publish, translate, create derivative works from, distribute, perform and display such content in whole or in part world-wide and to incorporate it in other works in any form, media or technology now known or later developed.

Don’t miss out!

Stay in touch with what parents are talking about in your community:

Optional: To be entered to win tickets to family friendly shows!