Dear Lakewood Scoop, After pondering it a bit, I feel that I must comment regarding a topic that was discussed during the Chinuch panel discussion posted here in July. Given the lack of veracity in the doctor’s comments, and overall negative tone and lack of understanding of PANDAS (an autoimmune encephalitic illness causes by strep or other infections), I feel like it’s my duty to respond and correct what can be highly detrimental misinformation. Even if I will help one or two afflicted families, this letter will have served its purpose.
I just want to preface, that I work as psychologist in a (public) school. I thus have the unique ability to follow children’s educational, psychological and social development throughout their early school years. When a child’s behavior or neurological functioning changes abruptly, I am there to evidence it; the parent does not need to convince me. Whenever new psychological-like issues surface, I urge that medical and trauma causes be explored first and foremost. Interestingly, it’s been my experience that many of these children have been found to have a strep infection and have fully recovered with prompt antibiotic treatment. But that is just anecdotal, so take it as you may.
Now for the research-based data – Firstly, the rate was grossly underestimated in the presentation. It should be noted that the estimated prevalence rate of PANDAS is closer to 1 in 200 children and can be higher in communities where the rate of strep or other infections (as well as the rate of sudden onset childhood anxiety) is increased. This would of course include our kehillas.
Additionally symptoms are not exclusively OCD and tics, but can include any basal ganglia impairment such as anxiety, anger, depression and/or aggression, as well as possible sleeping, urinary, sensory, eating issues and complaints of frequent pain (e.g., head, stomach, legs, overall muscle weakness). As we all know the brain is a complex organ responsible for practically every function of our body. If even a tiny section is damaged or inflamed, there can disastrous and far reaching consequences. Columbia University is in the midst of completing well-designed and facinating strep studies reflecting just that.
I have to say that, as both a psychologist and parent, I found the comments and tone in reference to the parents’ and family stresses and struggles in helping their sick children very offensive. As we all know, tension, strain in relationships and lack of strength to effectively parent are common outcomes when a child becomes seriously ill. This is especially the case when outside emotional support is lacking, a blatant issue, apparently.
I want to stress emphatically that this illness is not a result of a parenting or discpline issue. Treating it like such is extremely damaging to our children’s neurological health, making them sicker and delaying needed medical treatment. Prompt treatment is crucial for a full recovery!
I could not believe that the very doctors who are putting themselves ‘on the line’ to treat our sick children are being called “quacks” in this public presentation. I feel strongly about this illness being frighteningly real and under-diagnosed, but do not feel that there is a place for name calling in either direction. Rather, I believe that those doctors discounting the prevalence or severity are in dire need of more education, as well as a a more open-minded approach to new medical developments. Remember how ulcers were not believed to be bacterially induced at first, and hand washing was ridiculed? Something to think about, especially when some of your own sick patients are at serious risk.
Lastly, the condescending tone and statement about parents “hoping” that their children have PANDAS over other conditions really stung. While all loving parents hope that our children have treatable ailments, we obviously don’t get to decide. It was Hashem who chose for our children to be sick with this illness. We did not pray or wish for our children’s personalities and health to be snatched from us nor for us to be dismissed and scorned.
The one redeeming glimmer of hope in this isolating nightmare of a disease is that full recovery is possible and achievable. All we need is our doctors’ and community’s willingness to listen and learn; your support and can truly help make children and families well again.
Recently, ABC 20/20 featured PANDAS in a powerful and accurate presentation that I would strongly advise all medical and mental health professionals to watch before commenting publicly on this illness.
Thank you for listening,
Malkie Davidson PsyD
I have just 2 words in response to this letter: THANK YOU!
She is 100% correct- this is very real and I have seen a child go from being completely out of control with almost all of those symptoms to a new person – with antibiotics only after a few days.
Thank you for giving a voice to our struggling, vulnerable children and their families. It is my hope that all medical and mental health professionals will update themselves on the current PANDAS research and help scores of families live normally again.
Thank you for this awareness! As a parent of a child with pandas, it is sometimes difficult dealing with doctors and other parents who don’t understand what we are going through.
Thank you Malkie for writing an excellent response to the Chinuch panel. Your voice represents hundreds of frum parents that have children suffering from PANDAS/PANS.
So many pediatricians are simply uneducated about this disease. Therefore it usually takes several years of running around to many doctor until a correct diagnosis is made and treatment can begin. Meanwhile the symptoms get worse and the whole family falls apart.
We need more pediatricians who are capable of diagnosing and treating PANDAS, and more parent awareness. Your school is lucky to have you on staff.
May it be a year of gezunt for all of klal yisroel.
Let’s all wake up and smell the coffe PANDAS is real. Being in chinuch and the professional world,13 I have seen to much of this. The most discouraging thing for parents to hear (from doctors) is that PANDAS is a myth that some quaky doctors believe in. Just sit down with Doctor Susan Shulman and you will have a very different perspective of this topic.
Unfortunately some people don’t believe in it until someone in their family has it.
Thank you! We need to start recognizing this disease in our communities and helping those afflicted. It is real -and devastating to the entire family
Thank you so much for writing such an articulate and informative piece!
I have watched friends not only deal with the pain of a sick child but the added pain of dismissive doctors and community. When they finally found a diagnosis- which by the way – still has no hundred percent solution – being shamed and blamed and worse is additional tzar.
The research is ongoing and the medical science community is , as is typical when the work is new, in conflict. But up and coming research is available. We dont have time to wait for history to prove the new research as correct in order to give those suffering the compassion and support they deserve. At least be educated before dismissive.
Refuah shelaima b’karov to all who are suffering from this illness.
I think it would be a good idea to keep in mind the following basic things that can help prevent strep and other infections from spreading to others.
Adults and children should wash their hands with soap and water before eating a meal or snacks. Likewise, hands should be washed with soap and water when coming home from work, school, camp, or yeshiva.
All shuls, schools and other locations should have soap by their sinks.
Teachers and playgroup leaders should instruct children to wash their hands with soap and water before they eat snacks or lunch.
If someone in the family has an infectious illness, try to use paper cups and cutlery, paper towels instead of towels, etc. until they are better.
Build up your child’s immunity. There are many ways to do this. You can research this online or at the library or ask others who are knowledgeable in this area.
Yes, it does take time to do these things, but it takes longer to take care of children who are ill.
This topic shows how important it is for parents to do their own research for illnesses and other things related to the health of their children. There is a lot of information out there from reputable sources that can be accessed online. Show it to your doctor. If you are not satisfied with what he or she says about it, maybe it is time to find a different doctor.
May it be a year of good health for all, bezras Hashem.
THANK YOU for your letter. I have more than one child suffering with this disease and I know truly how hard the lack of support is. I have a pediatrician that is a “believer” but I don’t feel like I can talk about this with my family and friends because BH they just don’t get it. I wouldn’t want it any other way. However if all doctors understood the severity of this illness and didn’t dismiss it as nonsense our children would not have to suffer so much. Thank you again for the information that you have provided-hopefully this will help people understand a little better and be a little more supportive to people who are suffering.
Everyone should check out Sheila Rogers who has a whole website about this. My own son suffered with tics for a year and a half with all the “specialists” throwing up their hands and saying there is nothing to do…..Went to integrative doctor and after 30 days……no more tics. What a coincidence!!!
Thank You! I feel that those that belittle anything that doesn’t “sit right” in their brilliant minds, have never engaged in learning any subject for that matter. All subjects are vast and having an open-mind to those that have devoted significant parts of their careers, researching specific issues, is the mature, smart and respectful thing to do. Thank You again.
Is seeing Dr. Shulman the only way to get a Pans/Pandas diagnosis? Is there anyone in Lakewood?
This was excellent. Thank you so much. In addition to the handwashing tips previously noted, I would like to add, CUT YOUR CHILDREN’S NAILS. There is tons dirt/germs hiding under there that handwashing will not reach. Medical professionals such as surgeons who need to keep their hands scrupulously clean keep their nails short.
Thank you Malkie! PANDAS and PANS are unfortunately real. Strep is an ancient bacteria which makes use of molecular mimicry to survive. In rheumatic fever it imitates the heart so that the body cannot discriminate and attacks the organ. In PANDAS it imitates the basal ganglia. My own son’s PANDAS presented as encephalitis on an EEG. Initial symptoms were episodic focusing dificulties, fine motor dificulties, tripping and falling and bed wetting to name but a few. After a subsequent strep infection it turned into a living nightmare where my son couldnt eat, change clothing, play with friends, go to school, sleep or ride in a car. In the few months since I have discovered numerous confirmed cases in my various social circles. Some of these cases also tested positive for Lyme disease. Symptoms do not have to be as obvious as my son’s case. It makes me wonder how many kids are being misdiagnosed. My own son had one neurologist say he was autistic while another said he needed to take anti-anxiety medication. B”h his symptoms have improved with antibiotics. I have so much respect and gratitude for our treating physician and the handful of physicians who treat our children. Please see the link below it clarifies various points of misunderstanding regarding the disease. Healthyfreedomidaho.org/what you-should-know-if-youve-ever -wondered-if-your-child-has-PANDAS-or-PANS-even-if-youre doctor-ruled-it-out.
In Lakewood you can try Dr. Eilenberg.
Dr. Indich is the one who told me about PANDAS including that its not totally proven. He did recommend follow up and suggested seeing Dr. Shulman. I am far from a “quack” parent. Actually it wasn’t cleared up in a few days at all, but required a month of antibiotics recommended by an ENT. And its still not called true PANDAS which if not treated soon after its onset can leave lasting effects.
The reason why PANDAS isn’t proven (and I’m not sure about in my childs case) is because children with chronic illness and discomfort do not behave the way they would if they were feeling fine.
Thank you Malky for ur letter. The hardest part for me besides the physical abuse my son uses when in one of his flareups (from being around people who have strep) is when family and friends think we are just “spoiling” him by allowing him to eat his three foods that he eats, allowing him more tablet time when his obsessive thoughts take over and not “forcing” him out the door to school when he has panic attacks from school. We aren’t bad parents. We are doing the best we can with the circumstances we were given by Hashem. If u are a parent or sibling of someone going thru this hell, please offer ur support by actually reading up on this disease so u can understand a bit what they are going thru.
There is a Pandas support group available for those who need it. Please reach out to Malky for more information.
Excellent article Dr. Davidson! We wanted to keep a pack of rapid strep tests in the principals office in school- after I got called about my child’s out of character and out of control behavior and in discussion with my child later that day, was mentioned that it was hurting over here (throat) and went to pediatrician and was strep and treated with abtibiotics and behavior went back to normal….Bh! and it happened a few times. I have taken to therapists for other issues but there is definitely a mind-body dynamic that cannot be dismissed.
Thank you Malkie for spreading awareness and validating so many parents who are struggling with this issue!
This just touches the surface of the behavioral issues that are rooted in a medical cause. Since we have become so open minded about mental illness, we accept ADD, ADHD, SPD, PDD, ODD, ASD and more as okay diagnoses, and they are. But there is so much more beneath the surface. Our bodies are talking to us, our children’ symptoms are talking to us. If you and or your child have been diagnosed or are displaying a myriad of strange or new symptoms, I urge you to learn more about the affects of infections, mycotoxins and more on the body.
There is a shortage of New Jersey physicians that will treat PANS and PANDAS, let alone research it and support elimanting its root cause. Shame. We have the highest rate of autism, another form of inflammation as well. As a town we need to band together and understand what is going on with our kids. Is it the high rate of strep, other infections and retroviruses going around, is it the ticks, the water, the toxic overload in the form of chemicals, emf and/or junk food. Something is very fishy here. We need some Askanim on this pronto.
Wow! So well put and very true. Thank you Malkie for writing about this important issue,
Dr. Davidson, your letter was well written and informative. Thank you for your efforts to raise awareness of this crucial issue. It is NOT ok for children to be dragged from therapist to tutor to special ed teacher, while he/she is really struggling with something that is solely physical in nature. The first step to healing is knowledge. We need to let parents, educators, and therapists know what may really be plaguing their child.Thank you for doing your best to make a difference!!
After my son’s diagnosis I was shocked to learn how many of my friend’s children this had happened to. We are not hippies or fringe members of society. We are mainstream members of your communities maybe even your close friends. some of us have worked with children for years. I never learned about PANDAS in graduate school. B”h I am trained to recognize neurological vs behavioral vs psychological. B”h my years of training gave me the backbone to defy the multiple misdiagnosis spewed by manhattan specialists who turned a dead ear. (Looking back at pics you can see he was physically sick… his skin was grey and mottled and he had massive bags under his eyes). But not all cases of PANDAS are as clear cut as my child’s and not all parents have the professional background my friends and I have. Strep is at an all time high. Last year I heard of many non PANDAS children who could not rid their body of strep. Mental illness and children who receive services are at an all time high. I wonder how many children who I’ve treated over the years actually had PANDAS. How many children are having emotional physical or cognitive delays because of it. Isn’t it possible that there are children who are at risk because of it. Even if it is but one child that is one too many.
Awareness is the first step towards healing! Thank you Malky for reminding us to be vigilant!
Thank you dr.Davidson for spreading awareness and helping our precious children who are suffering.
Thank you Dr Davidson for spreading awareness.I find it interesting that you are a psychologist and you see that not every behavior is a result of emotional issues needing therapy and psych meds but some are due to actual physical illnesses.Maybe the flip side of being so accepting of mental health issues is causing us to not seeing if the body is actually sick and can be healed thus healing the behavior issues.
I watched the chinuch panel discussion and I just don’t get it. Doctors are OK with skyrocketing psychiatric illness rates in children but not OK with an increase in other illnesses?? Why not??
They should especially be open to PANS since it can explain and cure many of these R”L terminal “psychiatric” children!
I did some research and saw that anorexia can be one of the symptoms of this very real disease.by the way the only reason that Drs treat strep is because it can cause complications such as rheumatic fever etc.the NIMH and dr susan swedo are doing research on this for years and have come up with very real findings.so for a small town dr. to say its controversial or made up is ludicrous.who knows how many children are suffering because of lack of knowledge or some wrong diagnosis.why is autism on the rise?why are so many kids at risk?we can’t blame the parents and the yeshivos for everthing.Im not saying pandas caudes kids at risk just that we have to look at all the factors especially if the kid got deppressed out of the blue.#1 is we should listen to our kids and take there pain seriously.whether it is physical emotional spiritual etc.Hashem gave us our precious children to guard and keep safe.Hashem should give us the wisdom to search and find answers for all the pain that our generation is in.
Thank you to The Lakewood Scoop for publishing this very validating letter!
PANDAS needs more awareness and dedicated professionals like Malkie Davidson!